Monday, August 10, 2015
A hospital in Fayetteville, Ga., made special arrangements for a couple, married 68 years, to see one another during a recent stay. The couple could not share a room because of state regulations for private rooms, but staff at Piedmont Fayette Hospital arranged for Tom to visit Arnisteen during their stay, Tom, 96, "wept" as he talked about his love for Arnisteen, 92: “I just can’t be away from her, she’s the finest woman in the world,” he said.
Yes. Lovely. Sweet. Touching. But come on....really!!
The big deal here is not that this couple was able to hold hands across the chasm of state regulations and hospital boundaries. The big deal is that this is not the norm. The big deal is that the hospital's honoring of the bond of a lifetime of shared experience, meaning, and love that this couple share is so rare that this picture went viral.
Patient centered care - that omnipresent health care meme - should mean caring for what's at the center of the patient's world. If this were truly the case, then care should always be wrapped around the patient's core needs, values, and relationships. And the patient's life partner sits at the very center of it all. It is that relationship, for better or for worse, that exerts huge influence on the patient's physical, emotional, and psychological well being.
One day, during my partner's hospitalization for heart surgery, I was sitting near his bed, doing nothing, really. I said to him, "I wish I could help you." He responded, "Just having you here help me breathe easier."
In my dream health care world, this photo is one of thousands.
I'm interest in hearing from you about hospitalization experiences you and your partner have been through. Was the importance of your relationship recognized and supported? Were you asked to leave the room when the doctor arrived to examine the ill partner? Or were you asked to stay to hold his hand and share your perspective?
Friday, July 17, 2015
In Part 1 we met a woman who had reached her breaking point in her troubled relationship with her ill spouse. She, like many others, had to ask herself the tough questions that live at the intersection of love and obligation. She wrestled with deciding what her obligations were to her partner, and what her obligations were to herself.
This wrestling led her to examine her deepest beliefs, feelings, experiences, values, family legacies about illness, and her vision for her future. Those of you who find yourselves at your breaking point will need to do your own inner excavation.
You will need to carefully and patiently examine all these elements. You will need to ask yourself core questions like:
- What does this feeling want me to understand about it?
- Is this belief still valid?
- Do I still need this value?
- Are other values and beliefs more important now?
- Is there another way to think about old family stories about illness and caregiving?
- What are my bedrock truths?
Hopefully, your findings will begin to take shape, possibly in surprising patterns. You may see new possibilities emerge, ones that may be pointers to better pathways.
But that's not all. If possible, the partners should share their awareness, their self-discoveries with each other. They may find unexpected overlaps or unanticipated differences. By sharing their discoveries they may find ways to create a better balance, together. Or they may find that their differences are grievous and irreconcilable. Either way, the path will become clearer and clearer.
Not all couples can reveal their true-est feeling to each other. For some, that has never been their habit, and it may be too foreign, or too risky to do so. In this case, each partner needs to decide for herself what path she wants to walk, how she wants to take the next steps, and whom she wants to invite in as her allies and supports.
The woman I recently spoke with talked with her husband about her unhappiness. Surprisingly, he not only listened, but shared his feelings about his own misery. They realized that they each wanted to separate and began considering divorce.
It took courage for this woman to explore her deepest feelings, values, and needs. And it took courage to share them with her partner. Her reward was that instead of feeling guilt and shame over inflicting a separation on her ill husband, she felt incredible relief that separation was actually a shared choice.
Reaching your breaking point needn't be a time of shattering. The intensity of energy at that point can serve as a crucible where the different elements of your essence (and potentially also your partner's essence) can interact to produce something new. That something new can be separation (as it was with the woman I spoke with) or greater closeness, or a calmer acceptance of what is.
Monday, July 6, 2015
I had a conversation with a smart, insightful, articulate woman this week who has reached her breaking point.
She has been the primary caregiver for her husband who has had cancer for many years. But even before the cancer, their marriage was troubled. She described her husband as self-centered, angry, quick to blame, and slow to forgive. He is also a proficient verbal sniper -- firing off ugly names and harsh critiques with great dexterity.
A few years ago his disease went through a period of acceleration. His symptoms grew more pronounced. And his selfishness and harshness kept pace.
Recently, he began experiencing another round of increased symptoms and is about to go through some diagnostic test to reassess his cancer's status.
This self-aware woman has reached her breaking point. She knows that if he declines, physically and emotionally, and she is in position to play the caregiver role, she will "be destroyed."
What should she do, as she assesses her options at this intersection of love and obligation?
This is an intersection many partners living with illness arrive at. Ill partners may worry about adding greater burdens and decide to suffer in silence. Or they may feel that their illness requires that their well partner pick up the loads they can no longer carry. Well partners may feel it is their duty to willingly pick up those loads. And well partners may also feel that one more straw dropped on their load will break their backs.
How do you balance your obligation to your partner (whether it comes form love or a sense of duty) and your obligation to yourself?
There are no hard and fast rules in the illness playbook that answer this question. Each partner must dive into their repository of personal values, family legacies, love for yourself and for your partner, disappointments in yourself and in your partner, and your vision of the future.
In Part 2, we will explore how to dive into that repository and come up with the path that is right for you.
Friday, July 3, 2015
The chronic unpredictable stressors and trauma we suffer as children not only shape our emotional lives, but they affect our physical health and longevity.
Donna Jackson Nakazawa, author of a terrific new book, Childhood Disrupted, explains the link between emotional trauma and chronic adult illnesses. Donna's book is available in stores and on Amazon on
I highly recommend that you read this groundbreaking book, which shows why you or someone you know may have become locked in pain—and what you can do to recover.
Wednesday, June 17, 2015
First off, let's define the difference between sympathy and empathy. Sympathy is when your partner says, "I'm sorry you're hurting." Empathy is when your partner says, "I know how hard it is to suffer pain."
Sympathy comes from an ability to see and acknowledge your partner's hardships and express compassion. Empathy comes from knowing the hardships -- either because you have experienced them or can extrapolate from similar experiences -- and expressing, on a deeply personal level, to your partner, the emotions and challenges your "shared" hardships arouse.
The bond sympathy builds is a comfort. The bond empathy builds is a refuge.
A few months ago my partner, Richard, had an outbreak of shingles. And yes, he had not had the shingles vaccine. It was terrible. He described the nerve pain shingles produced as similar to what he imagined having six inch nails pounded into his chest and back would be like. He suffered deep, penetrating, sharp pain for weeks, with little relief. And he suffered all the consequences -- sleeplessness, fear, short-temperedness, impatience, irritability, distancing, and on and on.
As his symptoms faded, he reflected that while he had always had sympathy for my chronic pain condition, he now had empathy. I cheered and I cried, because I did have empathy for what he went through, and wouldn't wish it on a mosquito.
I am not recommending that your partner be inflicted with whatever is causing you to suffer. I don't wish well partners know physical pain; and I don't wish ill partners know the emotional and physical exhaustion of caregiving.
I do wish that we all took some time to go deep inside our own experiences and harvest the memories, and their emotional wrappers, that resonate with our partner's experiences.
If you have felt the confusion and fear of being lost, you may be able to resonate with your partner's experiences of being lost in the labyrinth of the medical system, seeking answers and only finding more informational breadcrumbs. If you have pushed yourself beyond endurance and know the experience of physical depletion and emotional weariness, then you can resonate with your partner's experience of ceaseless caregiving without the ability to do the one thing he/she yearns for -- to make it all better.
One afternoon several years ago, in Richard's post cardiac surgery hospital room, I lay on a couch next to him sighing that there was nothing I could do for him. He said, "Having you here, just being with me, helps me breathe easier."
Sometimes just "being with" is the best form of empathy. It helps us all breathe easier.
What are the ways you empathize with your partner's experience?
Friday, June 12, 2015
It can be somewhat difficult to understand the system-ness, the symbiosis, that develops for the couple. It might be more accessible to think of your relationship with your dog or cat. You are tuned into each other's moods. When you are unhappy, your pet may lick your hand or rub against you. When your pet is agitated, you pet her and try to rectify the source of her distress. You think of the effect of your decisions on your pet. Should you move, you look for an apartment that accepts pets. You may even have as a requirement that your potential life partner love your pet, and be loved by your pet. As intertwined as we are with our pets, we are even more bonded, more unified with our life partner, with whom we share beliefs, values, and experiences of much greater complexity.
Whether the couple relationship is a loving, compassionate one, or a constant series of sniper attacks, the couple is still a system, one that exerts massive influence on each partner.
Some partners are unkind and insensitive to each other. Even cruel. And this toxic relationship can affect how medical treatment is perceived and implemented. Some people we interviewed for our book, In Sickness as In Health: Helping Couples Cope with the Complexities of Illness, described a domineering well partner who influenced the ill partner to eliminate a prescribed medication because he didn’t like the side effects of nausea and tiredness.
If the relationship is an unhealthy one, the doctor or clinician, who is usually bequeathed a high level of authority, may be able to steer the partners into becoming more of a team for the sake of fighting the illness together; and, if this is not possible, at least the clinician will know what she’s dealing with and may be able to mitigate the impact of partner sabotage. It becomes especially important in these situations for the health care practitioner to either build a connection with the authoritarian partner, and/or encourage the ill partner to enlist a more supportive caregiver.
If the relationship is a loving, supportive one, and the couple is recognized as a unit of treatment, along with the patient, their combined forces can be marshaled to understand the illness and treatment options and make decisions that will enhance their connection and well-being. Those decisions will then be supported by the joined strength and love of the couple relationship.
As a psychologist we interviewed for our book said; "Love heals. It is the only thing that truly does."
Even if a physical cure is unlikely, a healing of mind and of heart are always possible. And that kind of healing requires love. The love of the partners for each other is a wellspring for that kind of healing love.
And if the partners have not had a loving relationship, then the final phase of life offers both of them one last opportunity to touch what brought them together in the first place. And hopefully they will find some embers of that first yearning that they can draw upon to create a shared warmth and mutual consolation.
I'm interested in knowing from you:
- To what extent have your doctors and other practitioners included your partner in their treatment approaches and asked about his/her well being?
- Have they asked about how you both are weathering the illness experience as couple?
- Have they asked what your relationship goals are?
- Have you told your doctor anything about how your partner is doing? How your relationship is doing?
Tuesday, June 9, 2015
The full title of this popular book by Boston surgeon and New Yorker magazine contributor, Atul Gawande, is Being Mortal and What Matters in the End.
It focuses on the ways in which traditional medicine neglects or actually harms the quality of life of people in the later stages of a terminal illness. He would like to reposition medicine as being in the business not of extending life, but of elevating well-being.
His book has been called "urgently needed" and "courageous."
And it is both -- but it doesn't go far enough. It has a hole in the center.
Being Mortal still puts the focus on the relationship between the doctor and the patient and ways in which the doctor can be more relational, more focused on what really matters to the patient. Gawande recommends that doctors dealing with very sick people ask them basic palliative care questions like these:
- What is your understanding of your situation?
- What are your worries for the future?
- What are your goals?
- What trade-offs are you willing to make to achieve your goals?
- What is unacceptable to you?
- What would a good day look like?
All good questions. And questions that will shift the conversation from doctor dictating treatment or presenting a laundry list of treatment options and leaving it to the patient to decide, to a conversation about meaning and hope.
So what's the hole?
The life partner is largely missing from Gawande's approach to helping the patient reclaim her final phase.
Yes he does write about his mother's presence during his father's approach towards death. But she's a presence, a caring and frightened sidebar, not a critical part of the treatment equation. And the relationship between them, their couple-ness, is not addressed.
What if, in addition to asking his father, he asked his mother the basic palliative care questions? What if he helped his mother and father talk to each other about their goals, and trade-offs, and hopes? What if he helped them decide together what they needed as individuals, and as a couple -- a couple who has moved through almost the entirety of their lives together?
I am not suggesting that Dr. Gawande merely shift his perspective to include the needs of the well partner. My guess is that, in his practice, he already does this. I am suggesting something else.
I see the life partners as an intertwined system, a system that mediates each person's life experiences. The partners sway together to their unique, intimate, relational music. When one steps, the other counterbalances. How they move through the final phases of one partner's illness, as a meshed system, will be one of the most important determining factors of how the ill partner passes, and how the well partner survives.
Whether the couple relationship is beneficial or detrimental, it has impact. I propose that shifting the focus from extending life to elevating well-being must incorporate the patient's most intimate relationship into the treatment process.
More on this in Part 2.