Caregiving Goes Both Ways
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.
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.
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.
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