Caregiving Goes Both Ways

Posted on September 17, 2014 by karen

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by Dr. Rob Rutledge, MD, FRCPC

Many years ago, I sat at the bedside of a woman who had recently been diagnosed with cancer. She was a lively spirit and was recovering nicely from her operation. At the end of the conversation she looked at me intensely and said, “Whatever you do – don’t tell my husband I have cancer.”  As a young physician I did not have the experience to explore why she felt this way.

As I was walking off the cancer ward, I was beckoned by a man who introduced himself as the husband of my patient.  He pulled me into a side room and the first thing he said to me was, “Whatever you do – don’t tell my wife she has cancer.”

What’s going on here? This is an extreme example of two people trying to protect their loved ones – and the truth is almost everyone does this to some degree.  It comes from a deep place of love. Whether it’s the person with the diagnosis or the family members / friend, the reasoning goes something like “She/he shouldn’t have to deal with me looking so stressed or hurt – having cancer is hard enough without having to take care of me.”  The problem is this ‘spare-my-partner-from-my-emotions’ strategy just doesn’t work.

Putting on the mask of positivity in front of our loved one causes a chiasm in the relationship. Firstly, people who know us well can see right through the mask. Not only are we not ‘protecting’ them from our natural emotions, the meta-message we’re sending them is “I can’t cope with this situation.  Let’s just try to remain positive and make out as best we can.” A conspiracy of silence develops and both parties end up feeling isolated. The real opportunity for mutual support and coming together as a couple (or as family members / friends) is lost. There is a much better way.

During our ‘Skills for Healing’ weekend retreats Dr. Timothy Walker, a psychotherapist and brilliant teacher, and I teach people mindfulness-based cognitive therapy – also called ‘reframing distressing thoughts’.  The technique is based on Dr. David Byrne’s classic self-help book “Feeling Good”.  Cognitive science has proven that our thoughts are the source of our emotions, and if our thoughts are irrational or exaggerated they can cause us unnecessary emotional suffering. For instance if we think “I’m no good” we can easily become depressed.

Tim and I take the weekend attendees through reframing the following thought: “I have to be the strong one. Can’t let him/ her know how I really feel. If I fall apart, that will make it worse for him/ her.”  Though we introduce this thought as originating from the family member/friend, it could as easily be the thought of the person with the cancer diagnosis.

The steps in reframing this distressing thought are as follows.

1.)  The first step is to be able to recognize our distressing thoughts.  This example “I have to be the strong one. Can’t let him/her know how I really feel…” is trickier than most exaggerated thoughts because the thinker may truly believe this is the best way to approach the situation. They may never question that their approach is actually causing everyone to feel worse.

2.)  The second step is to look at the thought with a rationale perspective using the following questions:

a)  What emotions follow from this way of thinking?  In this example of having to be the strong one, the emotional fallout can be varied. Most people feel isolated and lonely.  Others can feel a sense of resentment.  Generally there is an internal feeling of conflict and stress when people think this way.
b)  How does my body feel when I have this thought?  The feelings of isolation can manifest as depressive symptoms (eg. lack of energy). While resentment and stress manifests in the body in many ways.  (headache, acidy stomach, insomnia…..)
c)  Is this a helpful/ harmful thought?  As soon as people acknowledge that creating a separation in the relationship is hurtful they will agree that this is a harmful way of thinking – they are then primed for ‘reframing’.
d)  Is the thought exaggerated or irrational? This part of the exercise is done as if a lawyer were making a case against this way of thinking.  Some of the reasoning surrounding the thought may be good but the lawyer’s job is to point out the flaws. Take the phrase “I have to be the strong one”.  That sounds fixed as if one has to be the strong one 100% of the time. And the statement “If I fall apart, that will make it worse for him/ her” is a major assumption. The truth is we don’t know how our loved ones will react when we express our vulnerability. The roles of ‘caregiver’ and the ‘cancer patient’ evaporate when the person who has the cancer diagnosis is listening to (caring for) the caregiver expressing their emotional truth. The relationship can become much closer when ‘care’ flows in both directions.

3.)  The third step of reframing requires both kindness and wisdom. It’s as if your wise grandmother or a compassionate friend were offering you advice. Reframing starts with an acknowledgment of how difficult the situation is. You could say to yourself :  “This is tough. I have a lot of love for my partner/friend.  It’s awful to see them suffer….”  Add the wisdom garnered from step 2. For example you could reframe by thinking: “It’s best to be honest with each other about feelings. It creates more intimacy, and is truly supportive.”  Add something about possibility and how we can empower each other: “Maybe consoling me will make her/him feel better.”

Some extra advice:  There are times when you as the family member will decide to withhold some of your grief or distress because it won’t be helpful at that moment.  At minimum I’d recommend you ‘repair’ your distancing by saying something at a later time to your loved one such as “Last week I was feeling really badly when such and such was happening”.  Your loved one will probably say they knew you were hurting – and it will be a good opportunity for you both to discuss what was so upsetting about the situation.

I also recommend that family members / friends have at least one other person in their life with whom they can be totally open and honest.  Connecting deeply with others is healing and will allow you to tap into your natural resilience and strength.

Studies show family members suffer as much distress as those with the diagnosis.  It’s tough work but made much easier when we open to our loved ones and allow them to support us on our journey together.

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Dr. Rob Rutledge is a Radiation Oncologist in Halifax, Nova Scotia, specializing in breast, prostate and pediatric cancers. He is also an Associate Professor in the Faculty of Medicine at Dalhousie University.

In 1999, Rob co-created the ‘Skills for Healing’ Cancer Weekend Retreats. These weekend support groups teach a powerful and integrated approach to the cancer diagnosis and ways to heal at levels of body, mind and spirit. To date, more than 1,600 people have attended the retreats in over 20 cities across Canada and abroad. 

Rob also leads the Healing and Cancer Foundation, a Registered Charity, that freely offers educational videos, documentaries, and webcasting seminars – and he is co-author of a book called The Healing Circle, which captures the teachings and inspirational stories from the weekend retreats.

In 2010, Rob received Cancer Care Nova Scotia’s Award for Excellence in Patient Care and, in 2006 Doctors Nova Scotia presented him with the Health Promotion Award in recognition of his contribution to physician health and health promotion in cancer patients.

'Staying real and staying positive' by Flo Stang.

Flo joined us at the "Skills for Healing" Weekend Retreat at Brigadoon Village in Spring of 2012. You will enjoy reading Flo's beautifully honest and humorous post Perk # 81: My First Breast Cancer Retreat from her blog - The Perks Of Having Cancer: Follow Florence's Challenge To Find 100 Perks Of Having Cancer. 

Brigadoon Village (as magical a place as it sounds)

On Friday, April 13^th, Shawn and I traveled to Nova Scotia to attend the “Skills For Healing” breast cancer weekend retreat.   I was rather quiet on the drive, which prompted Shawn to ask, “Is everything okay?”   Suddenly an image came to mind of a plane landing, and a voice in my head said, “Ladies and Gentlemen we are making our final descent into the land of breast cancer.”   It was sort of like the feeling I got the first time I went to the cancer clinic.  Although I had been diagnosed for many months, there was a surreal quality about actually being there.  My mind was telling me, “You know Flo, you must really have breast cancer if you are sitting in a cancer clinic.”   But this time the voice said, “You know Flo, you must really be a breast cancer survivor if you are going to one of those retreats.”

Attending this retreat has been one of the most healing parts of my cancer journey (as well as one of the perks of having cancer!).  The wonderful facilitators, Dr. Rob Rutledge, and Dr. Timothy Walker (http://healingandcancer.org/)  simply exuded love and compassion as they taught skills such as meditation, yoga, how to re-frame our thoughts, and how to honour our bodies.  For me, these concepts were not new, and while it was a good opportunity for me to brush up on my existing skills, the real healing came from being part of the group: the healing circle.

While I have many “cyber-friends”  who share my diagnosis, this was the first time I was actually in a room full of women on various stages of their breast cancer journey.  It was so liberating to just be able to take off my wig and not worry about the shock value of others seeing me that way.  For the first time, having breast cancer did not make me different.  I was among kindred spirits.  Not only was I able to take off my hair, but I also took off my “Super Cancer Hero” cape and spilled my guts about my deepest fears and anxieties.   I cried.  Not one of those movie star cries, where a few tears creep down the cheek without ever disturbing the make-up.  No, this was more of a wounded animal howl accompanied by lots of snot and mascara-stained tears.  Oh, but it felt so good to open that floodgate!

I realized that I have been so intent on maintaining a positive attitude, that I have suppressed many of my “negative” emotions.  On this retreat I discovered that when it comes to feelings, it does not have to be one or the other.   In other words, allowing myself to feel anger, sadness and fear does not diminish my positive attitude.  As one lady said, “It is possible to experience joy amid suffering.”

I learned so much from this group of women, and I will carry their stories in my heart forever.  I have permission to share one of these stories with you.  Jody Cook is a 35 year old Paramedic from Bridgewater, Nova Scotia.  The first time I saw Jody, I was mesmerized by her presence.  She has one of those smiles that just lights up a room and you can’t help but to smile back.  Her sparkling eyes hinted at a mischievous spirit, which even her recent chemo could not dim.

Jody is the single mom to 9 year old Olivia and 12 year old Rodney (she is also the owner of a deaf horse, which Shawn feels I should mention).   In February, Jody underwent a double mastectomy.  That did not make her any different from many of the other women at our retreat.  What did make her stand out however, is how she carried this new body of hers.   Man, she rocked the survivor look!    Seeing Jody, so confident and comfortable with her flat chest made me feel kind of sheepish about the wad of cotton batting that I had stuffed into the left side of my bra.  Rather than lament about the loss of her hair, Jody saw it as an opportunity to experiment with different hair colors and styles.  However, she was just as comfortable going bald.  What most impressed me about this beautiful woman was her incredible openness and honesty.   In a group discussion about stress, most of us were willing to open up a little and show our human side.  Jody told this story: “One day I was feeling really tired and stressed and the kids were just driving me nuts.  I got so frustrated I turned to them and yelled: WOULD THE BOTH OF YOU JUST F**K RIGHT OFF NOW!”  The group erupted in laughter.  That story opened the space for all of us to be honest and show our vulnerable side.  Thanks Jody!

Dark haired Jody

Blonde Jody

Medium-brown haired Jody

Tip: Allowing yourself to feel anger, sadness, fear and other “healing feelings”  does not diminish your positive attitude.

How empowering your brain can empower your life along the cancer journey. At talk presented at InspireHealth.

InspireHealth is a world-class integrative cancer centre. The government of British Columbia funds medical physicians and complementary practitioners to provide individualized counselling and services for people diagnosed with cancer. They do research on complementary techniques, and publish a monthly research update written for the lay public. They have a great website InspireHealth.ca and offer webcasts and other services for free.

I love presenting at InspireHealth because the people who attend the talks really 'get it'. They've done enough groundwork along the self-empowerment path that I can take them to the deeper levels of acceptance, peace and love.

I was quite excited giving this talk because I could include the recent brain science I had been studying.  Here it is, enjoy: https://www.youtube.com/watch?v=Hf08wyeB7UI&list=UUJ2xpeSPwmrloNTGynL240A

"Take a deep breath … but not too deep" by Dr. Rob Rutledge

Take a deep breath … but not too deep

The room fell silent. We each slowly breathed in and out, being very curious about the sensations of a simple breath. I could feel my body relaxing more and more with each breath.  I looked up at the middle-aged woman and her daughter. Their eyes were closed, their faces softened and content. Even Ben, the medical student, seems to have found a moment of deep peace after a hectic clinic day.

Fifteen minutes earlier, the consultation had started out in a routine fashion. Margaret had been through an uncomplicated breast cancer surgery, and was to see me for radiotherapy.  Dressed immaculately in a soft cream-coloured suit, she stood to greet me, beaming and holding my hand in hers.  “It’s such a pleasure to meet you. I feel so grateful. I’ve read about you online and really like your holistic approach….” She is gushing with enthusiasm, speaks of nursing her mother through a recent diagnosis, and the wonderful care she received at the cancer centre.  The lines come one after another. She also admits she’s anxious, takes the occasional nerve pill, has always been scared of hospitals.  I listen and we joke, enjoying each other’s company.

Her daughter, a lovely woman in her late thirties, sits beside her Mom smiling. She’s travelled from afar to be there around the time of the surgery and radiation.  The young woman winks at me, as if to say ‘I know my Mom is anxious’ and when I begin my physical exam by feeling her Mother’s neck from behind she chirps in “Look Mom, you’re getting a free massage too.”

Her mother in the meantime is trying to settle herself down by doing a deep breathing exercise. Her shoulders heave under my hands, and I notice that she continues to hyperventilate with her eyes closed when I ask her to lie down.  My inclination is to let her know ‘you’re breathing is making you feel worse’ but I wait till we are sitting down again.

Margaret tells me she’s claustrophobic and wants to take a valium prior to each treatment. I describe that people lying on the radiation machine have lots of space around their faces (not like an MRI scan). I suggest she can learn a relaxation and visualization technique from a psychosocial specialist that she could practice to reduce any anxiety she might have prior to or during her treatment.  Ben agrees to take Margaret on a tour of the radiation treatment machines so that she might feel less anxious about the unknown.

Margaret’s daughter pulls out her cell phone to show her mother a simple animation to teach the relaxation breath. A ball rises up for five seconds in a tube of slowly bubbling water, then drops slowly down to the bottom of the column over the next five seconds. The pattern continues. This app can be adjusted for varying times of up-phase and down-phase. Margaret peers into the phone and tries to time her breathing to correspond with the ball movement. Again her chest is heaving with each in-breath.

I have to stop the exercise. I’m delighted that they are so pro-active in empowering themselves to learn this essential healing skill – but Margaret’s technique is not helping her.  I offer a short explanation before we practice the breathing technique again.

Learning to tap into the relaxation response when we feel stressed is an essential healing skill. The concept is to activate the parasympathetic nervous system, invoking relaxation, by tricking our mind into believing everything is completely fine using the body’s ability to engage a specific breathing technique. This is what I call the body-mind connection (the signals go from the body to settle the mind).  When we breathe slowly and deeply into the abdomen (instead of breathing into our chests), we engage the diaphragm (the muscle that separates our lungs from our abdominal organs) and the vagus nerve that stimulates the relaxation centre in our brain.  If the out-breath is longer than the in-breath, then the relaxation effect is further enhanced.  The point here is that using the upper chest and ribs and lifting the shoulders to breathe causes more of the stress reaction.  Meanwhile, breathing into one’s belly instead of one’s chest promotes relaxation. 

I take Margaret, her daughter, and the medical student through the following technique:

1.   When you recognize you’re stressed, press the ‘pause’ button

2.   Become very curious about the sensations in your body (stay curious).  Let go of the thoughts about the situation.

3.   Take four slow breaths deep into the abdomen (or belly). Allow the shoulders and upper chest to be still or quiet.  Try lengthening the out-breath compared with the in-breath.

4.   Use the kind and wise part of your brain to direct your thoughts and actions.  You may hear reassurance like “I can get through this situation with peace and love” or “I’ve gotten through tough scenarios before and I can get through this one”.

5.   Keep coming back to the breath and your inner guide as need be.

Practicing relaxation everyday by meditating, or prayer, or positive affirmations/self-talk is a great way to reset the stress-o-meter to a much more peaceful level.  When or if we run into stressful situations, it’s easier to regain that grounded and loving state through a ‘relaxation breath’ technique as described above.

PS- Thank you, Margaret, for providing the inspiration to create this blog entry and for sharing in wonderful moments of mutual learning, peace and joy!

"I could never meditate…." by Dr. Rob Rutledge

Joanne, a Radiation Therapist, seems especially calm today.  Her dark eyes shine and her voice is soft yet confident. We’re working together in the CVsim where we take x-rays of patients in preparation for their treatments. As we work, we share stories about our kids, laughing about how work is the only place where people actually listen to what we’re saying.

I comment on how peaceful she is and ask if she meditates to help find calm in the midst of her very busy life. “I could never do that” she says matter-of-factly. “My mind would be all over the place.”

Christine, another wonderful high-energy Therapist, is listening in now. She has been going to a masseuse to help relieve the painful muscle knots in her neck and upper back that have stopped her from sleeping well for years. I can see that we can all use the teachings that Tim, my partner in the weekend retreats, offered me many years ago. So I tell Joanne and Christine about my meditation practice.

Every morning I get up about 30 minutes earlier than I would otherwise. I kneel on a pillow in a small room, and begin to focus my attention on the sensations of my breath. About two seconds into starting I start to think about what I need to do that day…. “I have a meeting at 4:30 with the radiation oncologists, and I’ll need to present the new procedure of getting patients with cancer in their bones in earlier….” At some point I realize I’m thinking about something else and, without judging myself, I bring my mind back to concentrating on my breath. Then about three seconds after that my mind starts to wander… “At the meeting yesterday, when Peilong said that we’d have to update the software on the medical record system, I cracked that joke, but everyone thought I was being serious, why don’t I just shut up, I’m such a goof sometimes…” Again at some time I can see that I’m thinking about something else and I bring my mind gently back to focusing on my breath. And 3-4 seconds later I’m off on some other thought. And back and forth I go dozens of times in a single session.  

I’ve been meditating somewhat regularly for 15 years – i.e. nothing has changed, really. Most mornings by the end of the session I do experience a sense of settling into my body, a feeling of my energy being grounded in my body. I can see my body, my emotional energy, and the thoughts that come and go – and an awareness that holds the human experience (which I believe we all share). The days I meditate I feel much calmer, happier, and I think I’m a better physician. I can focus on the person in front of me, pay greater attention to them and allow natural compassion to come through my words and actions. And I’m more efficient because I can do one thing at a time and focus my attention – and when I see my mind wandering off to something else, I can bring it back to the task at hand – just like during the morning practice.

As I’m talking to Joanne and Christine I realize I could talk for 30 minutes more on the recent science showing how meditation actually rewires the brain and all of its proven benefits but instead I summarize my monologue with “Meditation is going to be the new ‘exercise and healthy diet’ of the future”

Joanne nods her head “I think you should teach meditation to all the therapists.” We start to figure out how this could happen in our busy cancer centre when Christine asks the obvious question “Could we learn to meditate on our own?”

I offer this advice. It’s best to find a teacher or a group that meditates regularly because there is a wonderful palpable energy when people get together to meditate. But it is possible to teach yourself by watching or listening to YouTube videos in which the teacher who explains a simple technique like focusing on the breath. Then practice with or without the audio – even just 5 minutes in the morning or before bedtime can have a powerful effect on how you feel and how you sleep.  

“I could never meditate because my mind goes a hundred miles an hour” is a common theme I hear in my travels. But for me the time we spend in silence is all meditation – not just the moments when the mind settles and we experience peace. Meditation is also about becoming friends with ourselves. The emotional energy is going to vary from day to day and even within a single session.  We can begin to see that our thoughts are going to come and go – and we don’t need to get so attached to them.  It’s natural. And we can learn to love ourselves for our full humanness just as we are.

Befriending the Monster at the Door - By Rob Rutledge MD

Dr. Rutledge was a guest speaker at the Young Adult Cancer Conference on June 7th in Toronto. After hearing Travis Gobeil speak at the conference, Dr. Rutledge wrote this article:


Befriending the Monster at the Door

“It’s like there’s a huge monster at the door and he’s so scary that I don’t even know what he looks like”. Travis, a young man in his early thirties, tells a group of cancer survivors what it’s like to live with the anxiety and the panic attacks that he has suffered since his diagnosis of Hodgkin’s lymphoma, over eight years ago. 

“If the monster started knocking at the door, I would just cower in the basement, covering myself up with blankets, hoping he would go away.” He speaks figuratively about the first few years after the diagnosis when, at seemingly random times in his life, he would suddenly be overwhelmed with such a heart-pounding sense of dread, he thought he would die. Trying to ignore the feelings or escaping what was happening by distracting himself with video games simply wasn’t working. “It just felt like every time I didn’t acknowledge him, he would come back even stronger and uglier. His pounding just got worse and worse.”

The leader of the session explained the difference between a defensive mechanism and a conscious strategy of working with anxiety. A defense mechanism is a way for the psyche to simply suppress the overwhelming feelings so that we can continue to function – usually only just well enough to get by. Suppression happens mostly at a subconscious level, and does not allow the psyche to process, come to terms, or even potentially reframe or overcome the source of the anxiety. Developing a conscious strategy to work with the anxiety takes deliberate intention and work – and ultimately will allow the brain to rewire itself.

The first step is to acknowledge, and with time, accept that anxiety is a natural part of life. (Of note: anxiety significantly affects at least 20% of people affected by cancer). Our ancestors developed these deeply seated psychological mechanisms to learn from fearful situations so that we humans wouldn’t repeatedly expose ourselves to predictable/known risks. ‘Once bitten, twice shy’ stops us from re-provoking an aggressive dog and increases our chance of survival. Anxiety and panic attacks become problematic when they persist unnecessarily and cause us debilitating symptoms.

Travis then describes the classical desensitization process. “Finally, I got some help. I learned that if I heard the knocking at door, instead of running away, I would actually go to the front door. At first, I’d look through the peephole at the monster – even just for a moment. It helped me to see him as a large red bull -horned beast – it’s both visual and visceral – and it gave me a sense of control. Over time, I could open up the front door just a crack and I’d tell the monster to go away. We weren’t really friends. As the years went by, I’d hear the monster there, and kind of shout out to him ‘OK. I hear you. Thank you. You can go away now.’ And his knocking got a lot quieter.”

The work here is to accept whatever feelings and thoughts are knocking at our inner door. To stay with the most difficult feelings. Simply Stay. Acknowledge. Even befriend the monster at the door. Like the 15^th century Sufi mystic Rumi suggests in his poem The Guest House (translation Barkman Coles) the difficult emotions point us to something bigger in ourselves.

This being human is a guest house

Every morning is a new arrival

A joy, a depression, a meanness

Some momentary awareness arrives as an unexpected guest

Welcome and entertain them all!

Even if they’re a crowd of sorrows who violently

sweep your house empty of its furniture

Welcome and entertain them all

They may be clearing you out for some new delight

The dark thought, the shame, the malice

Meet them at the door laughing

and invite them in

Be grateful for whoever comes

For each has been sent

as a guide from beyond.

One of the many benefits of a meditation practice is that it can help to bring a sense of spaciousness and awareness that can hold whatever is coming up in the level of our mind. Brain science shows that meditation empowers the left prefrontal lobe which is responsible for dampening down over-exaggerated emotions. Our brains become wired to gently hold all of our experiences with a greater sense of equanimity and compassion for ourselves.

Travis’ final words to the group offer great wisdom. “I don’t think you want give the monster a big hug right away. It takes time. Lots of time. And I think the monster will be part of my life from now on.” Then Travis’ tone gets really serious as he looks directly at all the people in the room. “I can’t say how important it was for me to get some professional help. So if you have any issue I really think it’s best to see a councillor, or social worker or whoever. It makes all the difference in the world.”