What Role Does Mindset Play? November 9, 2014
Posted by ijwoods in Blog+.Tags: caregiver, caregiving, Ellen Langer
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I always keep a lookout for good, interesting journalism on end-of-life caregiving and I have to say that the New York Times has really delivered some great articles over the last several years. A few weeks ago another article caught my attention, not about caregiving per se, but about a subject that I believe needs to be part of the caregiving conversation; mindset and health.
The NYT article “What if Age is Nothing But a Mindset?” highlights the work of psychologist Dr. Ellen Langer, a Harvard psychology professor. Back in the early 1980’s Langer ran a psychology experiment with a group of men, in their seventies, who were in good health but manifesting typical old age deterioration; walking with a cane, arthritis, stooped over, weakness, etc. At the conclusion of the experiment, five days later, the men had gone through a transformation. “They were suppler, showed greater manual dexterity and sat taller… Perhaps most improbable, their sight improved. Independent judges said they looked younger.” Today Langer is involved in bringing her work to even more challenging areas such as using her brand of psychology to try and shrink tumors in stage 4 metastatic cancer patients. It was at this point in the article that I started to think about her work in the context of my own caregiving experience.
What Langer did
In her original experiment Langer took this group of aged men, had them live together surrounded with nothing but items and culture from the heyday of their past. For five days they were immersed in the 1950’s, watching and reading the news from that time, TV programs from that period, magazines, music and so on – all from that period of time. Even their conversations remained in this period. The outcome? Reliving that time period impacted the mindset in which they viewed themselves – i.e. they were able to get in touch with their more vibrant and youthful selves.
The physical impact of that change in mindset appeared to have a direct effect as noted above. In a similar fashion Langer is attempting to bring a positive mindset to breast cancer patients by once again creating an environment that will have them think differently about themselves and their condition. As Langer describes it, even the very diagnosis of the illness appears to cause a mindset that brings on the symptoms the patient expects to feel. “You change a word here or there, and you get vastly different results”.
Now, even though I believe there is some truth is all this, I also know that in the long run, no matter what we do, we will not overcome death and disease. Still, the question it brings up for me is twofold: can our mindset actually prevent us from dying prematurely and during that extended period can we maintain a good quality of life? There are a lot of books out there about the power of our words and how those words affect how we view ourselves, resulting in habits, actions and quality (or lack of) of life. But how much of this is anecdotal and how much is scientifically proven? Nonetheless, I like the sound of it. It resonates with my own life experiences and I was consequently happy to learn about Langer’s work.
So what about us caregivers? 
Most of us who end up caregiving are not psychologists, doctors or professionals in the caregiving industry, yet we become involved in a dynamic with another individual that can be highly complex and overwhelming. At times it’s very simple because the love and care we feel comes easily and genuinely. That love guides many of our actions. But there are so many variables caring for someone that it’s easy to feel way out of our depth. To do the smallest thing like roll someone over on the bed, can be terrifying when you don’t know what you are doing. But here is a whole other aspect, namely the psychological side of what’s going on. Add on top of that times when your loved one is delirious or unable to think straight and you’ve got some serious challenges in being assured you are responding in the best way.
But it’s not only us, what about those professionals who interact with our loved ones such as doctors, hospice and hospital nurses and aids? I really loved the hospice nurses who came over to care for Kris but I noticed that their psychology varied. Some were more sensitive to what was said around Kris, others weren’t. Some brought up language in her presence that assumed death, others refrained. Those conversations that assumed death made me very uncomfortable. Not because I couldn’t handle it, but I was worried about how it was affecting Kris.
On one hand I see there is value in being realistic, but on the other hand I wonder how our “realism” affects the recipient? I have met people who have overcome amazing odds. A friend in Florida was diagnosed with cancer and was told she didn’t have long. She mostly ignored it and went on living happily for another 15 years. Yes, this may be an anomaly, but it also makes me wonder about the toll our mindset has on our health and well being.
When Kris found out that the targeted chemo didn’t work on her secondary liver cancer and that the lesions had doubled in size, it felt like a death sentence was issued. Even the doctors said it wasn’t worth doing anything at that point. We both cried. It was like entering a world where hope was no longer valid. I find it chilling that from that day onward her deterioration seemed to really kick in and escalate. Sure maybe it would have been the same even if she hadn’t received the results of her test, but I’ll never know.
Does caregiving only encompass making the person comfortable? Or is there another aspect to this in which our words and mindsets play a bigger role than we think? I don’t profess to know the definitive answer to this, but I will certainly keep my eye on the work of Dr. Ellen Langer.
What are your thoughts on this subject? I’d love to know.
Here are a couple of Dr. Langer’s books:
Counterclockwise: Mindful Health and the Power of Possibility
Conscious Departures 
Good article; thoughtful insights. I took care of my mother for nine years and she died here at home last December. It certainly did seem that, as soon as the doctor said she needed hospice, the train picked up speed. She had been declining slowly for years. When the doctor called in hospice, he said she had less than six months. Within about six weeks, she was gone.
this is good stuff….a good reminder….thanks…
Thanks for your comment.
On my 57th birthday in February of this year, the oncologist told Richard and I that the cancer had spread from his spine to his shoulders, ribs pelvis and his liver. It was a chilling way to start ones birthday; ‘do you want to continue with more radiation’ asked the oncologist? What do you say at that point? Subsequently, our primary care doctor called (who we simply adore), sadden by the news herself, said ‘we must let him die with dignity.’ Hard conversations to have, knowing that the end is just around the corner.
Richard was always a fighter. Upon the original diagnosis of 3 to 4 months to live in 2011, he beat the odds. Cancer was not the winner, love was the winner.
Richard died peacefully just 19 days after my 57th birthday. Even when he was in hospice, I just figured it was a matter of time before he just got out of bed and would come home with me. I’ve come to realize those thoughts were coming from being his partner, because that is what I miss the most about him not being here with me.
Caregiving is two-fold, especially when you are in a Caregiving role for a spouse or partner. In sickness and in health means quite a bit when two people are committed as one. Caregiving goes beyond “making the person feel comfortable.” Caregiving takes a relationship to the next level, it binds souls, it allows you to do things that you never thought you were capable of doing. In sickness and in health, love is a beautiful thing.
I believe when we are in after caregiving “where our words and mindset play a bigger role than what we think.” When we are in the middle of Caregiving, we are so focused on doing, that we often forget about simply being. When caregiving ends, dealing with the relief that the caregiving is over, along the sadness of the lost, on top of the grief simply to move on is when our words and mindset play a bigger role that what we think.
I know that I have the capacity to be a ‘professional caregiver’-maybe some day I will volunteer in hospice so that I can share our experience which hopefully will be of benefit to others. For me it is OK to admit that I don’t miss the day to day chores of Caregiving. I don’t miss the trips to Walgreens, coordinating doctors visits, worrying about rides to radiation, etc. Yet if he was sitting right next to me now, I would do it in a moment notice, without a problem, without a complaint. I just own up to the fact that I just miss my best friend, pal and partner. That is how my mindset helps me get through the days.
Beautifully said Chris, thanks for the response and for sharing your experience. It’s tough thinking back over these episodes but I have to agree that love burnishes the experience in such a way that turns it into one of life’s more memorable periods – in a bittersweet way. Facing the reality and realizing that this is the fate of us all is an incomprehensible shock. But, to know we not only shared intimate moments with someone we loved as they gradually slipped away, and to have been in position to express the love we feel through the caring is fulfilling and an extraordinary blessing. It’s an vast universe of emotion and deep interaction during the caregiving.
I was listening to an interview done on public radio here in Minneapolis with a person who has ALS and is not expected to live much longer. One quote from the interview that I really liked was “I want a good life and I want a good death.” We don’t often think about that aspect of life’s equation and that it should be as consciously approached as we approach the rest of life. Anyway, it’s a beautiful interview and worth listening to (transcript also available): Bruce Kramer sets his sights on a ‘good death’
Thanks for the reblog!
Reblogged this on The Purple Jacket and commented:
Please take a moment to read this wonderful blog post about the role of ones mindset, by Ira Woods. Ira’s wonderful blog, Conscious Departures, is a must read for all Caregivers!
My comments on the Ira’s wonderful post are below.
On my 57th birthday in February of this year, the oncologist told Richard and I that the cancer had spread from his spine to his shoulders, ribs pelvis and his liver. It was a chilling way to start ones birthday; ‘do you want to continue with more radiation’ asked the oncologist? What do you say at that point? Subsequently, our primary care doctor called (who we simply adore), sadden by the news herself, said ‘we must let him die with dignity.’ Hard conversations to have, knowing that the end is just around the corner.
Richard was always a fighter. Upon the original diagnosis of 3 to 4 months to live in 2011, he beat the odds. Cancer was not the winner, love was the winner.
Richard died peacefully just 19 days after my 57th birthday. Even when he was in hospice, I just figured it was a matter of time before he just got out of bed and would come home with me. I’ve come to realize those thoughts were coming from being his partner, because that is what I miss the most about him not being here with me.
Caregiving is two-fold, especially when you are in a Caregiving role for a spouse or partner. In sickness and in health means quite a bit when two people are committed as one. Caregiving goes beyond “making the person feel comfortable.” Caregiving takes a relationship to the next level, it binds souls, it allows you to do things that you never thought you were capable of doing. In sickness and in health, love is a beautiful thing.
I believe when we are in after caregiving “where our words and mindset play a bigger role than what we think.” When we are in the middle of Caregiving, we are so focused on doing, that we often forget about simply being. When caregiving ends, dealing with the relief that the caregiving is over, along the sadness of the lost, on top of the grief simply to move on is when our words and mindset play a bigger role that what we think.
I know that I have the capacity to be a ‘professional caregiver’-maybe some day I will volunteer in hospice so that I can share our experience which hopefully will be of benefit to others. For me it is OK to admit that I don’t miss the day to day chores of Caregiving. I don’t miss the trips to Walgreens, coordinating doctors visits, worrying about rides to radiation, etc. Yet if he was sitting right next to me now, I would do it in a moment notice, without a problem, without a complaint. I just own up to the fact that I just miss my best friend, pal and partner. That is how my mindset helps me get through the days.
As always, a most thoughtful and beautiful post. As for realism, IJ, it’s so hard to know. As a medical person, I know there are times when death is inevitable and it doesn’t help anyone to hold out unrealistic hopes. On the other hand, the mind is powerful and sometimes our own individual belief that we can keep going actually helps us do just that. The tension between desire to live and the desire to die is always there. I had a friend who suffered great pain with ovarian cancer for a month before life finally let go and she was at peace. And she wanted to die. So each case is individual and unfortunately we cannot know the outcome and therefore know which way to lean–for realism that death is close by or some strong hope or belief that we can hold on and just stay right here.
Thanks.