Wednesday, June 17, 2015

Moving From Sympathy to Empathy

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

Have You Read "Being Mortal" Part 2


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

Have You Read "Being Mortal" by Atul Gawande? Part 1


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.

Thursday, April 23, 2015

U.K. Efforts To Support The Couple

From a U.K. based website:

"RELATE Worcestershire (a U.K. based charity) is calling on local government to give more NHS (National Health Service) support to couples where either partner is living with long term health conditions as part of its Best Medicine campaign.
The charity which operates in Bromsgrove and Redditch, is asking people to sign a petition following the release of a report based on a YouGov poll, which found that around one in four people with a life-limiting health problem or who were disabled said their condition had impacted negatively on their relationships with partners, friends, family or colleagues.
Val Northcote, counsellor at Relate Worcestershire, said: “It can be a long road when you’re living with physical or mental health condition, and couple, family and social relationships are a vital part of making the journey better. Yet when we need our relationships most, the effects of having a health condition can pile on the pressure..." 

At least it's happening somewhere.....sigh...  Do you know of any efforts in the U.S., or elsewhere to support couples living with illness?

Saturday, April 18, 2015

Divorce Rates Higher When a Partner Has A Critical Illness

From a recent study reported on in the Iowa State Daily:

"A recent study at Iowa State found that when a wife gets a serious illness, such as cancer, heart disease, lung disease or stroke, the marriage has a higher chance of ending in divorce.
Amelia Karraker, lead author for the study and assistant professor of human development and family studies, published the study in the March issue of the Journal of Health and Social Behavior...

Out of the 2,700 couples, more than 30 percent ended in divorce when the wife or husband got sick. When the wife was the one with a serious illness, divorce rates rose a considerable amount. The husband's illness still ended up in divorce but not nearly as frequent.

“This could in part be to gender socializing of roles within a relationship. In society, women are taught to be caregivers, especially with loved ones," said Tiffany Iskander, staff psychologist at Student Counseling Services.

Gender roles could affect the divorce rates, which could throw off the marriage in a noticeable way, ending in divorce. Another factor that could put pressure on an existing marriage is if the wife believes she is not receiving the care she needs...

“Significant life events may also exacerbate already existing issues within a relationship,” Iskander said.  Another idea as to why the divorce rates go up significantly after getting a serious illness is the wife or husband realized they were not happy to begin with..."

It's great that a study corroborates what those of us living with illness in our relationships know too well - illness affects the relationship.  What's missing for me is - now what?

My soapbox is that the couple/patient-caregiver dyad should be at the center of the treatment.  Every drop of the treatment affects that relationship, and that relationship is the filter through which all treatment is received and applied.

The patient needs support.  The caregiver needs support.  The couple needs support.

I am curious - in your experience with the health care system and providers, has the impact of illness on your relationship ever been addressed?

Wednesday, April 8, 2015

Dementia and Consent: Husband Accused of Raping Wife Who Has Alzheimer's

I caution you not to rush to form an opinion about the issue raised by this case of a man accused of raping his wife who has Alzheimer's and was deemed unable to provide consent.  Think about what comes up for you as you consider this case.
"A former state lawmaker accused of raping his wife in a nursing home is forcing an Iowa court to confront a little-discussed question of aging: When is a person suffering from dementia unable to consent to sex?
The case centers on Henry and Donna Lou Rayhons, both 78, who got married seven years ago in a union that seemed to offer a second chance at love for the two, who had both been widowed. But their domestic routine of church activities and political functions unraveled as Donna’s health began to fail.
Last year, Donna Lou Rayhons was moved into a nursing home because she was suffering from dementia and Alzheimer’s disease.
A family conflict developed over how to care for her, culminating in a meeting in which the nursing home staff told her husband that his wife was no longer mentally capable of legally consenting to have sex.
State prosecutors say Henry Rayhons – then a long-serving Republican state representative – ignored that message. On Wednesday, he will stand trial for sexually assaulting his wife, who died in August. The charges were filed days after she died.
Many older couples experience the hardships of illness, mental decline and living apart, but what happened with the Rayhons has little precedent. Experts could not recall another rape case that happened because a previously consenting spouse could no longer legally acquiesce....
When the charges were first filed, Henry Rayhons’ family released a statement.
'Donna’s location did not change Dad’s love for Donna nor her love for him. It did not change their marriage relationship. And so he continued to have contact with his spouse in the nursing home; who among us would not,” read the statement, which went on to call the charges “illogical and unnatural.'
The crux of the case is the question of Donna Lou Rayhons’ ability to consent. Iowa law defines an act as sexual abuse in the third degree if the two parties are not living together as husband and wife and if one person “is suffering from a mental defect or incapacity which precludes giving consent...”
Here are some complexities that came up for me.  Not answers - more questions:
  • I have spoken to couples living with Alzheimer's and several said that physical contact - presence, affection, sex - is often a channel of connection when words are not available.
  • If he forced himself on a resistant partner, that's clearly a violation.
  • Is it equally a violation if she did not indicate either approval or rejection?
  • If she reciprocated - does that imply consent? Or are any of her decisions and responses suspect because her mental faculties are impaired?
  • If she is deemed unable to consent, does she get any say in any of the treatments that are recommended?
  • At what point, and how is she declared unable to consent?  I'm guessing there is a clear area, and a lot of gray area.
What are your responses to this situation?

Friday, April 3, 2015

Sometimes It Takes A Dog

It's been too long since I've posted anything on this blog.

I've been slowly, too slowly, creeping out of a pain relapse that started four months ago.  I can just about see blue sky over the rim of the crater I've been in.

When I'm having a relapse, well, everything relapses.  Including writing blog posts.

It took a few doses of intermittent pain relief and hope, plus finding this amazing video that says so exquisitely what needs to be said about the power of love between partners and the consuming agony of loss to return me to writing.

Wiley lives at Lockwood Animal Rescue Center, a sanctuary for wolf-dogs.  Wiley barely escaped death at an animal control facility before arriving at Lockwood.  Wiley is now part of a program where he provides support and therapy to war veterans.