Caregiver Holiday Blues

We may naturally think of holidays as more complicated for those who have a chronic condition or illness.  But how often do we think about what holidays are like for the partners who so often act as caretakers for their ill mates?

One woman I spoke with recently, who has been the primary caregiver for her husband who has multiple sclerosis, felt it her duty to make sure the holidays were as celebratory and seamless as possible for him.  She said that he suffered, so it was up to her to bring some holiday joy into his life. She spent days, and nights, baking, cooking, cleaning, organizing small groups of friends and relatives to visit in clusters that wouldn't tire her husband out too much.  She felt obligated to paste the mask of holiday cheer over her exhausted face, and keep it there.

Another caregiving partner I spoke with felt that he did double, if not triple duty all year long - caring for his wife, working full time, and providing much of the care for their children.  Holidays were his time for a break.  He intended to ask friends and relatives to bring the holidays to his wife, while he sat in his arm chair, watched sports, and napped.

These examples are two ends of a spectrum.  I think the connective thread in this spectrum is that caregivers need consideration and permission to take care of themselves, all year long, and especially during the holidays when expectations of cheerfulness can become oppressive for those of us who live with illness in our relationship.

This is not to say that you shouldn't enjoy whatever holiday spirit speaks to you.  And part of that spirit may include doing some special things for your partner.  But the equation should flow in two directions.

The ill partner can also do what he can to bring a little specialness into the holidays for his mate.  And that can be something as simple and as powerful as words.  The ill partner can tell his beloved that she is indeed beloved and express what he appreciates about her -- and not just her caregiving, but the specialness of her essence.

Sometimes words, especially those that convey that you truly see and know your partner and love her for her goodness and her frailties, can be the best gift of all.

Childless Couples Have Higher Death Rates and Mental Illness!!??!!

I hate scientific studies that don't investigate the assumptions on which they're based.  They do harm.  The findings slither around and get into the heads of people who treat people for the issues the research purports to understand.  And the misconceptions become protocol.  Here's one example.

The Journal of Epidemiology and Community Health published an article declaring a connection between childlessness and increased risk of death and mental illness.

Among the findings:

• Having a child cuts the risk of early death, particularly among women.
• The early death rate from circulatory disease, cancers, and accidents among childless women was four times as high as that among those who gave birth to their own child, and 50% lower among women who adopted.
• Similarly, rates of death were around twice as high among men who did not become parents, either biologically or through adoption.
• The prevalence of mental illness in couples who adopted kids was around half that of other parents.

What the study states but doesn't investigate is that for their research they used:  "population-based health and social registers, we conducted a follow-up study of 21 276 childless couples in in vitro fertility treatment."

Do you hear the sound of "WHAT!??!" beginning to reverberate?

Might it be that couples who have been living in the infertility system for months, maybe years and have had their original life script expectations erased, have had doctors and drugs and timetables invade their intimate time, have spent gobs of money, and have had repeated cycles of devastating disappointment may be in a very different state than couples who have CHOSEN not to have children?

And let me state my assumption up front.  Choosing not to have children is not dysfunctional.  It's not a psychological condition.  It's not an ethical/moral lapse.  It's not a sign of immaturity or selfishness.  It's a legitimate choice.

It may be that the researchers' findings do apply to couples who undergo infertility treatment in order to have a child.

But there is harm in assuming that all couples who don't have children are at higher risk for death and mental illness. 

Happy Holidays When You're Not Feeling So Happy

The holidays are so packed with contradictions.  John Stewart on The Daily Show said the other night that holidays are the one time of the year when you feel compelled to get together with the people you try hard to avoid the rest of the year.  They're also a time when every message around you - from stores, news, advertisements, magazines, TV - demand that you be sparkly and celebratory and spend money on others.  For those of us dealing with illness and its corollaries - pain, exhaustion, distraction, medication - and for those of us who live with and love partners who have an illness, the messages of the holidays can put expectations on us that are intolerable.

So, how do you cope with the holidays?  What have you learned over the years to help you spend your energy and attention in ways that don't deplete you and even give you some joy?

My approach is to set expectations as early as possible - with myself, my sweetie, and family and friends.   I accept invitations in the hopes that I'll feel up to going.  But I offer invitors the caveat that I may have to cancel at the last minute if my body tells me to stay home.  I find that most people respond by saying, "Whatever you need is fine.  Just tell me how I can help."  And if they don't respond that way, I probably don't want to go to their party any way.

What do you do?

Why Did I Change the Name of This Blog?

This blog is renamed:  In Sickness As In Health: helping couples cope with the complexities of illness because that is the name of our book, which will be published in January 2013.  I decided to make the blog and book names match.  In addition, the book website, not so coincidentally has the same name.

This blog will remain a place for in depth conversation and analysis of the complexities of how illness affects the couple relationship and how couples can cope with the strains and changes illness delivers.  The book website is a place to learn more about our book.

Here is a brief description of the book:

For the past several years my co-author (Roanne Weisman) and I have been working on our book, IN SICKNESS AS IN HEALTH: Helping Couples Cope With The Complexities Of Illness.

We interviewed couples living with illness and experts from many fields -- psychology, theology, hospice, medicine, nursing, rehabilitation, government, the military, and law.  We met couples (and individuals) who became even stronger because of the lessons illness taught them. And we met couples for whom illness revealed the chinks regular daily life had been masking, and many were then able to repair them.

Our couples and experts have profound and practical guidance for readers who want to deepen their primary relationship and better manage adversity.  They not only offer advice about topics such as communication and coping, but also on practical matters such as managing the health care system and getting your legal affairs in order.  Their amazing stories and insights have value for those who are currently dealing with illness, and also for those who have good health but want to be more proactive in building a better relationship before any illness might hit.

Writing this book has been a profound and humbling and enlightening experience.  We wrote it because we both lived the experience of having a severe health condition disrupt the patterns and expectations of our primary relationships.   We and our partners were whiplashed by the fear and uncertainty and pain illness inserted into our lives.  And there were no resources available to help us learn how to be cope, together.  

We hope that listening to the voices of other couples dealing with illness and experts who help them will offer you useful guidance and a sense that you are not alone.

Thanks

Like many of you I've been looking forward to and dreading Thanksgiving.  Looking forward to the warmth of being in a circle of friends surrounded by a feast.  And dreading the inescapable seduction of gluttony.  And, if I'm being completely honest, I'm also fearful of having my pain interfere with my pleasure.  I don't want to admit that -- for fear that acknowledgement will become inevitability.  But the fear is there.  And I will have to be prepared to make accommodation on the spot.  And explain to the feasters why I'm standing or why I am wearing a heating pad as part of my wardrobe.....Sigh....

But I do want to share my list of what I am indeed thankful for.  Here goes:

1. The medications I hate to take but am hugely grateful for.
2. Friends who know when I'm not doing so well and don't ask how I'm feeling but just text me: "I'm thinking of you."
3. Television.  And On Demand, Netflix, Hulu, Tivo.  Particularly Homeland and Spaced.
4. Crap mysteries - books and British TV shows
5. Dried fruit, since I'm no longer eating sugar.
6. The flaming red leaves on the Japanese maples in my neighborhood.
7. Missing my dog, who passed away five years ago.
8. My book (In Sickness As In Health: Helping Couples Cope with the Complexities of Illness) which is coming out in January ).
9. My dear family and friends.
10. And more than anything in the universe, my husband, Richard, whose love and selfless support keep me breathing.

What's on your list?

The PTSD of Relapse

I had my first pain relapse in over a year.  I have no idea what caused it.  Could have been flying, insomnia, decaf coffee, a disturbing movie, a butterfly flapping its damn wings somewhere.  All I knew was the pain was back, and I dropped down the shaft into the PTSD (Post Traumatic Stress Disorder) pit.

I huddled.  I made frantic phone calls to doctors (none of whom returned them...sigh).  I went to the dark places of forever, never, always.  I clung to my heating pad like it was a life raft.  I had no conception that this would ever end.  The years of relief I lived between the onset of my pain condition and this current relapse disappeared.  The reassurance those good years could have offered was dissolved in an instant by the first waves of pain.  My rational mind went walkabout.  It was just me, my heating pad, and my terror.

Except for Richard.  He became my memory.  He once again hoisted up the mantle of hope and draped it over my sunken spirit.  He reminded me that I was in PTSD-land and that while my now was awful, it wasn't predictive of my future.  His voice and sanity reached me.

I went back up a step on my meds.  I unwound.  I reached.  I'm doing much better now.

Richard just came into my office as I was writing this and put his arm around me and chanted, "I'm so happy, I'm so happy."  Me too.

How Did Your Parents Deal With Illness?

How far do we travel from our parents' patterns?  A question psychotherapists and their clients have been wrestling with for decades.

We can't escape the parental imprint.  Some of us may not want to.  But those of us who did hope to be different often find ourselves in our 40s or 50s unexpectedly leaking parental behaviors or attitudes we thought we had purged ourselves of in our 20s.

I sometimes hear myself saying to Richard, my partner, as he heads out the door for his Tae Kwon Do class, "Be careful."  He has a second degree black belt and has been studying for years.  He is always careful.  My admonition is a spillover of my father's anxious voice warning me to be on the lookout for endless, unnamed dangers hiding in plain sight at every turn.  Other times I see myself tighten up like a fist when something I thought I had control over twists in an unpredictable direction.  It is not my jaw that clenches in agitation; it is my mother's jaw, on my face.

How our parents do or did illness is a powerful pattern.  Did they suffer in silence, while allowing no one to offer tenderness or help?  Did they submerge into illness and allow it to define who they were?  Did they use illness to control and manipulate?  To get attention?  Did they remain engaged in living and loving?  Did they learn from illness to become more fully who they were?  Did they become nastier to each other?  Or sweeter?  And finally, did they take care of each other -- physically and emotionally?

My parents, who kept each other at a distance when well, became even more separated when ill.  They went so far as to resent each other for their increasing incapacities.  It was not pretty.

There were times when I was in the thick of my pain condition, that I isolated and withdrew from Richard.  But more often, I allowed my pain to teach me to reach out for comfort and connection.  I had to.  For me, the voice of pain was more powerful than my parents' example.

Dealing with illness can be a consuming job.  When you find yourself behaving in ways that don't create the kind of bridge to your partner that will help lighten the load for both of you, pause and ask yourself:  "Am I playing out a pattern that doesn't really belong to me?  Whose voice am I speaking with?  Can I do it differently?"

How did your parents deal with illness?  What did you learn to do and not to do from them?

Do You Maintain or Reduce Your Meds?

I'm not even sure why I do this, but I am continually trying to reduce my pain medication.

I stabilize for a period of time, and then I try to taper.  I drop a few pills and then I begin to feel tiny ripples of pain - I call them guppy ripples.  At that point either I pay attention to them and go back up to the last medication level at which I was stable; or I pretend they are indigestion, try to ignore them for a week or so.  Too often the guppies then turn into barracudas, and I have to increase the med dosage beyond where it was when I began to taper.  Sometimes, though, I can successfully taper, and this then justifies my next attempts to cut down on meds.

Richard has learned that his voice needs to be a quiet one during these medication experiments.  He reminds me of my doctor's perpetual advice to of just stay stable at the level of meds I'm on.  At some point I ignore his counsel and do my thing.  If (or when) I suffer the consequences, he just holds me and reminds me that I had stabiity and can have it again.

If you're the ill partner, how do you manage your medication?  And if you're the well partner what role, if any, do you play around medication matters?

When Do You Tell A New Potential Partner About Your Health Status?

I have a friend who is HIV positive.  He has been so for more than two decades.  He still wrestles with the question of when to tell someone he is dating about his status.  He doesn't want to scare the person off, but neither does he want to mislead.

I have a twenty-seven year old friend who was just diagnosed with celiac disease.  She wants to continue to throw herself headfirst into romance and not have to explain her diet restrictions to a new potential boyfriend.

A thirty-five year old friend lives with depression and has to continually adjust her medication as her symptoms change.  She doesn't like to admit even to herself that she wrestles with depression and often ends relationships before her symptoms require conversation.

This is a complicated area and there is no one right answer for all situations.  Balancing honesty to another with your own privacy needs is a tricky equation.  Your health and its requirements is your business -- up to the point where you and your friend start to feel really interested in each other and inch towards commitment.  It's still your business, but just like other aspects of your heart, mind, and soul, your health starts to stretch to become shared ground.

So, what might be some considerations for telling?

1. Wait until he/she starts to matter to you.  But don't wait too long.
2. Be willing to answer questions, even before he/she asks them.
3. Be as comfortable with your condition as you want your potential partner to be.  Your own acceptance level of your condition will have an impact on his/her experience of the situation.
4. Give him/her time and space or attention and empathy.  You probably needed a combination of these elements, and so might he/she.
5. Lean on your friends.  That's always a good thing.

How did you decide when to tell your partner?  What happened when you told him/her?

What Is Your Relationship with Your Primary Care Doctor Like?

I heard two stories recently about primary care doctors.   In one the PCP was heroic in helping the patient, a woman who has a painful neurological condition, not only find a miracle-making specialist, but he also made sure medical records got transferred, and followed up with the patient and the specialist to ensure that the connection was solid and productive.

In the second story, a woman, with MS, had a heroic PCP who expedited referrals, verified record transfers, and followed up - not only with the patient, but also with her partner.  One day, the PCP asked the patient if he could speak with her husband (who had accompanied his wife to most of her appointments).  The patient gave her permission, and the PCP brought the husband into his office, and simply asked him, "How are you doing?"  This was the first time this had ever happened for the husband with any of his wife's many doctors.  He told the PCP about his worries and left the office feeling much lighter, and accompanied.  He brought this lifted spirit back into his relationship with his wife.

This conversation took all of 7 minutes.

What is your, and your partner's, relationship like with your PCP?

Couples and PTSD

excerpted from an article on Boston.com by Deborah Kotz

Couples therapy helps relive pain of post-traumatic stress disorder

"About 1 in 12 Americans experience post-traumatic stress disorder at some point in their lives after experiencing a violent crime, war zone, or other traumatic event; all too often, the flashbacks, anxiety, insomnia, and withdrawal from everyday life leads to marriage conflicts and divorce. Now, though, new research published in the Journal of the American Medical Association suggests that a specific form of couple therapy can both improve symptoms of PTSD and lead to stronger romantic relationships.

In the trial, 40 heterosexual and homosexual couples -- with one partner having PTSD -- were given either weekly therapy sessions in the VA Boston Healthcare System or in a Toronto research center or were assigned to be in a control group; those with PTSD who had the couple therapy experienced a greater improvement after 15 weekly sessions of therapy compared to those who didn’t have the therapy."
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Thanks to Ms. Kotz for writing this piece.  Those of us living with physical or emotional illness know how much our partner is affected and how much our partner affects us.  It makes perfect sense that treatment that involves both partners will have a stronger outcome.

Have you used couples therapy as part of your toolkit for dealing with illness?

Travel Tips for Rolling With Illness

PFAM - Patients for a Moment - a monthly collection of posts written by patients about some aspect of their experience of living with illness is up at Duncan Cross's excellent blog.  Have a read.

Wish Upon a Wedding

 excerpted from an August 12 New York Times article:

Helping Couples Facing Illness  
By ERIC V. COPAGE

WISH UPON A WEDDING, a nonprofit organization that provides free weddings for couples in which one partner is terminally ill (or both), was started in 2010 by Liz Guthrie, a former wedding planner who is now the organization’s executive director.

“I was looking for a way to give back to the community,” said Ms. Guthrie, 42. In 2009, she organized a $100,000 wedding giveaway in San Francisco, which was “only given to one couple,” she recalled. “It kind of bummed me out because I thought there were lots of couples deserving of a wedding.” 

To date, Wish Upon a Wedding, which has 23 chapters nationwide and relies primarily on donations of time and materials from vendors, has provided weddings for 47 couples. It operates without regard to their sexual orientation. 

The reasons couples choose to marry, even when their time together may be short, vary.

“The idea of going through a whole ceremony and cementing that bond was a very spiritual thing for me,” said Alexis Kidd, 42, of Houston, who has cancer of the diaphragm. Wish Upon a Wedding provided her wedding last November to Christian Kidd, 57. “It was a celebration of how we felt about each other.” 

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 My questions for you:  did you and your partner marry or have a commitment ceremony knowing one of you had an illness?  To what extent did you talk about how the illness would impact your lives?

On the Road

In the old days, before illness, Richard and I traveled a lot.  In fact, when we were in our mid-thirties we quit our jobs and hit the road for a year.  Bali, Burma, Malaysia, New Guinea.  Lots of adventure and lots of indelible connections along the way, with each other and with strangers who became lifelong friends.

In the late 1990s, my pain condition put an end to all road trips.  An end to all adventures that did not involve visits to new doctors.  I traveled from room to room, in our house.  Richard sometimes paced by my side to keep me company.

Now we are traveling again.  Not too far from home, and not too exotic.  I want to be within easy reach of a doctor or a pharmacy.  Even thought pain is not the plague it once was, it's still a companion.  We both accomodate to its demands.

We get to the airport very early so I can run to the bathroom repeatedly or sit and meditate.  I get anxious that the pain will get worse, and Richard holds my hand and reminds me that it will also get better.  I check my carry on bag repeatedly to make sure no gremlin made off with my medication. Richard reminds me that even if there were a larcenous gremlin, I could get more meds at any pharmacy.

Something about the pressure in the airplane cabin combined with my anxiety does always make the pain worse.  Sometimes I take an extra dose of meds.  Sometimes I'm able to immerse myself  in a cheesy mystery or a sappy movie.  Every so often Richard will pat my shoulder or squeeze my hand.  He knows better than to show too much sympathy or concern.

When we arrive, we head right to our hotel or apartment.  I nest. I claim the space.  Make it my own.  A safe place.  If we're not too jet lagged, we walk.  In fact, walking is not just something we enjoy, it seems to condense the pain.  If we walk enough, the pain evaporates.

What makes travel not only possible, but rejuvenating?   It's having a sweetie by my side who knows what I'm feeling and fearing and who stands ready to help any way he can.

Are you able to travel?  What helps you?

Bad Times are Not So Bad

I have been under tons of work stress lately.  Not sleeping. Scripting conversations that will never take place.  Imagining justice where banality will inevitably prevail.  Not taking intended slights personally, but still suffering from the resulting alienation.  And moaning and bemoaning endlessly with Richard about the lost opportunities to make a difference.

Then I realized that I'm complaining, at full bore (pun intended), about a work situation.  Just like I used to do in the pre-illness, pre-pain days.  I was immersed in the actions and reactions of a scenario that had nothing to do with doctors or medication or waiting.  Everything that was happening was immediate.  I was a player, not a recipient.  I was suffering from the interpersonal, not the biological.

The biggest gift my illness has given me is the gift of perspective.  In contrast to the awfulness of the bad times and the pain-filled days, work stress is a walk in the park.

Has this ever happened to you -- where your or your partner's illness cast a different perspective on a work or other life situation?

When Grief Doesn't Come

A friend's wife died a year ago of cancer.  It's a Jewish tradition that at the one year death anniversary the headstone is set on the grave.  This ritual is called an "unveiling." The headstone serves to identify the grave so that family and friends can find it when they visit.  It is a way of finding and connecting to the beloved deceased.

My friend has had a very hard time finding his wife during this past year.  He does not have dreams of her. He can't hear her voice.  Her touch faded soon after she died.

He envies his children and friends who have regular visitations in the form of stumbling upon sweet memories at unexpected moments.  Seeing a black cocker spaniel running across a field morphs into seeing her and her black cocker diving into the ocean and swimming circles around each other.  Biting into a strawberry resurrects the flavor of the amazing salads she made that always had bits of sweet fruit hidden under the tart green leaves. A stranger's gesture becomes her fluid hand brushing her hair back from her forehead.

I think he fears that grief will be an endless abyss.  He may be right.  But I don't think it will be an endless, bottomless abyss.  And since he can't yet approach the edge, he can't yet see her on the other side.

Do you know anyone who has suffered a deep loss and is having trouble grieving?  Have you experienced trying to move through a grief process around your own illness experience, or your partner's?  What has that been like?

When Parents are Enemies

My mother passed away a few weeks ago. She died of the same condition my father died from two years ago -- hospitalitis. That is -- you go into the hospital for one serious condition, and while there, the treatment results in unintended consequences, like aspirating fluid into the lungs, central line infection, and finally sepsis, which causes death.

They were both elderly with ailments and while neither one was terminally ill, they were not averse to dying. Their deaths were terribly sad, but not tragic. They had lived lives of consequence, filled with strong and loving stories. Their most generous stories, regrettably for me, were not about each other.

They were snipers. They sprayed each other with bullets of harshness and of indifference. Any dried up piece of turf could become their battleground. My father salted the food she prepared without tasting it -- blast! My mother smoked her secret cigarettes in the bathroom and saturated the house with the sickly evergreen air freshener she used to mask the shameful smoke odor -- blast!

No hand holding. No mushy names for each other. Just the binding routines of taking care of a business and a family, which substituted for marriage.

As they got older and physically impaired, the animosity grew worse. He, once the boss of a manufacturing plant, only had her to control. She, once the supervisor of the office pool in that plant, only had her own tiny tasks left to organize. He griped at her for not getting the mail on time. She expanded her silence.

I think he really did love her and was clueless about how to ever show it in a way that could touch her. He felt his inadequacy, was defeated by its weight, and retreated into TV and food. I don't think she ever did really like him. She resented him for not being enough and punished him with her indifference.

Age and illness did not undo them as a couple. All the fractures had been there for decades, growing wider and deeper. Age and illness just represented a new terrain. It constricted the bounds of their world and gave them fewer distractions and places to hide from each other.

I loved them both. Admired them both. Not for who they were to each other, but for who they were to me and to the world. They were good and kind. They gave ceaselessly to anyone who needed their comfort or benevolence. They were smart and funny.

I often wonder what it would have been like to have had parents who knew how to love each other.

Do you have (or had) parents who are good to each other? What is that like? Are your parents more like mine? What's that like for you?

Does Illness Make You Wiser?

Does suffering make you wise, or just cranky? Does illness teach you to be more compassionate, or impatient?

I'd like to believe that one of the lessons my pain gave me is to appreciate the small things that are exquisite and to let the big things that are really small just flow over me, like a passing shadow.

And I'd especially like to believe that the love and care Richard showed me as he helped me every day is a gift I treasure and return every day.

The truth is a bit of everything, as it often is.

I am wiser for having suffered. I learned about what was hidden in the inner recesses, and I learned not to be afraid of that or of anything, except more pain. I learned to accept unconditional love and unselfish caretaking -- a harder task than I imagined it would be. And, most days, I do remember that nothing is life or death, except, well, life or death.

But I do sweat the small stuff. The neighbor's car parked too close to the driveway. The colleague who oversteps his bounds and acts like a jerk while thinking he is being magnanimous. Even the remote control that's out of synch with the TV and will change the channel or adjust the volume, but not do both.

And I get cranky and impatient with Richard when he steps around the bin of recycles instead of taking it out to the curb. Or when he reads a piece of my writing and corrects the grammar instead of telling me how elegant the concepts are. I do love and appreciate him even day - just not to the exclusion of getting annoyed at the small stuff.

I wish I were wiser and more compassionate. I keep trying. I guess illness gave me potential, and the rest is up to me now.

What have you learned from your illness?

Loving After Cancer

Excerpts from an article in the Jerusalem Post about a subject that rarely gets addressed. The whole article is worth reading.

The article refers to the work of two clinicians: Prof. Sharon Bober, a clinical and research psychologist at Harvard Medical School’s Dana-Farber Cancer Institute and Dr. Rivka Klein, a Jerusalem-based clinical social worker and sex therapist who received her PhD in social work at the Hebrew University

How to bring the loving back after cancer

By JUDY SIEGEL-ITZKOVICH

It’s unfortunately an “unmentionable” subject that even makes many physicians blush – and many others avoid raising the subject at all. But as growing numbers of cancer survivors want to resume intimate relations with their partners, raising awareness of the problem and offering clinical help need to be put on the agenda.

... Returning to one’s previous level of intimacy can often be a problem, because surgery, chemotherapy, radiotherapy and hormonal medications may cause a lot of long-term side effects that interfere with sex.”

Sexuality, she says, is an experience at the junction of mind, body and relationship, and cancer treatment can affect all of those elements. From the first session, she tells patients that sexual dysfunction deserves as much attention as any other quality-of-life issue; that the problems should not cause embarrassment or shame; and that there are treatments that really work.

Cancer treatment may result in heart damage, kidney problems and disruptions of both male and female sexual function.

Men can become impotent, while women who had ovarian cancer can be propelled into early menopause. Other types of cancer can also have side effects.

....the example of one 38-year-old woman who suddenly lost her ovaries to cancer. “She hadn’t been told about what would come next in her life. She wasn’t ready for it. Her doctors told her she should be happy to be alive. But she and her partner suffered from her hot flashes, vaginal dryness, fatigue, dramatic loss of estrogen and lack of libido. She was depressed.”

Usually, either the patient is ashamed to raise the issue or afraid to embarrass their doctor – or the physician doesn’t know enough to raise it or afraid to embarrass the patient.”

The longer patients wait to undergo rehabilitation of their sexual functions, the harder it is to preserve.

“There are a lot of people who specialize in sexual medicine, but only a small subset who work with cardiac and cancer survivors and medical illness. Even younger cardiologists and oncologists may feel no obligation to talk about sexual function with their patients or don’t like to discuss it themselves. We have studied primary care doctors, many of whom weren’t prepared for broaching the subject.”

But “patients usually need psychological treatment, an integrative mind/body model. Women who have had a mastectomy, for example, usually feel very unattractive.

“It would be great if not only doctors were educated and willing to discuss these issues, but patients were also willing to hear about them,” they conclude. “There is no reason why people have to suffer in silence. They have suffered enough already."

When the Illness Tide Turns

Wait a minute. I'm the sick one here. I have the mysterious pain condition that gets me a first class ticket on the medical specialties train. You ask me how am I doing today. You notice the slightest blip in my demeanor and wonder if I forgot to take my meds again. You come to my medical appointments with me to be my buddy and my memory.

Richard got the news from his cardiologist that his heart is showing signs of enlargement. We have known he has a congenital valve issue and that some day (in a galaxy far, far away I always thought) he would need heart surgery. Over the past couple of months he has had blood work, worn a twenty-four hour halter heart monitor, had a treadmill stress test, and had a two and a half hour cardiac MRI (which experience his brother describes as akin to being in a coffin on a construction site). We are lining up the specialists for him.

The worry-vane is now being spun about by his condition. I had grown used to him being the allay-er of anxieties and the carrier of hope for my recovery. It's been a long time since I thought of him as fragile in any way. He has a damn black belt in Tae Kwon Do ! If that's not a guarantee of longevity, even immortality, then what is?

I am, of course, doing my best to show him the amount of concern he can tolerate and the level of optimism I truly feel. I am feeding him beets and spinach and kiwis and quinoa. He has, with my quiet acquiesence, taken over control of the TV remote control device. I try to make him laugh. I hold him close.

I don't like this new equation. I'd prefer to be the sufferer than the one bearing witness, helpless to make it all better. We have, thankfully, lived long enough so that the illness tide is turning, and Richard is getting swamped. In my heart, I do know that one thing we excel at is holding hands and rowing together. It's my turn to build up some calluses.

Has this kind of turn ever happened in your relationship?

Broken Heart Syndrome

Broken heart syndrome -- not just an invention of romance novelists. Takotusbo cardiomyopathy, or sudden heart failure linked to extreme stress, is also known as broken heart syndrome and is most prevalent in post-menopausal women. The heart receives a flood of stress hormones that causes ballooning of the left ventricle, chest pains, shortness of breath, and an irregular heartbeat. An especially stressful physical or emotional situation, such as a traumatic injury or the sudden death of a family member, can set off an attack.

Richard and I have joked that we want to die at the same moment at the age of 90 while scuba diving of Grand Cayman Island. Neither one of us wants to survive the other for very long. What follows is a sad-sweet story of a long-term partners who died minutes apart from each other.

"James and Marjorie Landis of Westmont, Pa., were married and inseparable for 65 years. They died this week just 88 minutes apart.

Marjorie, 87, passed away Monday after a long illness.

James, 88, died an hour and 28 minutes later of a heart attack. He was at his wife's side when she died.

"The last thing he said to her was, 'It's OK. I love you. We had many good years goether. I will see you real soon,'" said the couple's granddaughter, Erin Miller.

'I just think he died of a broken heart. I don’t think they could have lived apart from each other.'

The cause of the death of bereaved longtime spouses, the study found, can be a condition known as takotusbo cardiomyopathy or sudden heart failure linked to an emotional experience. Some experts have dubbed the condition 'broken heart syndrome.'"

What Happens When the Caretaking Partner Gets Sick?

She is in her late fifties. A financial planning executive with a successful bi-coastal business that requires frequent flying and rushed meals. While not athletic, she has always been active. In that out-of-nowhere way that illness sometimes hits, she came down with a systemic infection that flattened her and almost literally took her breath away. Sitting exhausted her, and any activity left her panting for air. She has been treated for the past six months with a combination of antibiotics, steroids, and rest. She is not who she was, and is still discovering who she can be.

Her husband has been a loving and attentive caretaker. He took charge of their interactions with the world - from grocery shopping to medical specialist hunting. When she was too exhausted to shower, he bathed her. He went to every doctor visit with her and remembered the information she was too distracted to hold onto. Her job was to rest and recover. He took care of everything else.

Then, he was clipped by a car while riding his bicycle. His ankle was broken. Now he is in pain, and his mobility is severely limited. And he feels rotten - for himself and for the ways in which he can no longer help her.

They are trying their best to be kind and loving to each other; that has always been their way. But pain and exhaustion take a toll on the best intentions.

They have a community of friends who are pitching in to help. And they have an excellent collection of take-out menus from restaurants that deliver.

Underneath the practical and emotional strains, they are strong, and they are scared. A lot - like laundry and work projects - doesn't get done. They look to the future for signs that things will get better because the present is one big ball of uncertainty and hurt.

Have you ever been in the situation where the caretaking partner got sick or had an accident? How did that affect your living situation? And what helped you cope?

Check Out This Week's Grand Rounds

It's hosted by USA Today. It will appear serially in four separate postings throughout the day today. The four topical areas are:

• Health tips
• True stories
• Myth busters & controversies
• Healthcare costs

Cohabitation or Marriage: Which is Better for Your Health and Happiness?

My guess is that this study did not look at couples living with serious illness in one or both partners. I wonder what the findings would have been if they had? I'm not suggesting that marriage weathers the stress of illness better than cohabitation, or vice versa. Nor am I suggesting that the legal ties of marriage mean couples tend to stay together during illness (nor am I suggesting that staying together is the right thing for all couples). It's just interesting, and not surprising, to me that the inevitable period of illness in a long-term relationship is not part of a study like this.

What are your thoughts? The study summary is below:

Study finds few well-being advantages to marriage over cohabitation

Benefits of marriage reduce over time while cohabiting couples experience greater happiness and self esteem

A new study, published in the Journal of Marriage and Family reveals that married couples experience few advantages for psychological well-being, health, or social ties compared to unmarried couples who live together. While both marriage and cohabitation provide benefits over being single, these reduce over time following a honeymoon period.

"Marriage has long been an important social institution, but in recent decades western societies have experienced increases in cohabitation, before or instead of marriage, and increases in children born outside of marriage," said Dr Kelly Musick, Associate Professor of policy analysis and management at Cornell University's College of Human Ecology. "These changes have blurred the boundaries of marriage, leading to questions about what difference marriage makes in comparison to alternatives."

Previous research has sought to prove a link between marriage and well-being, but many studies compared marriage to being single, or compared marriages and cohabitations at a single point in time.

This study compares marriage to cohabitation while using a fixed-effects approach that focuses on what changes when single men and women move into marriage or cohabitation and the extent to which any effects of marriage and cohabitation persist over time.

Dr Musick drew a study sample from the National Survey of Families and Households (NSFH) of 2,737 single men and women, 896 of whom married or moved in with a partner over the course of 6 years. The study focused on key areas of well-being, considering questions on happiness, levels of depression, health, and social ties.

The results showed a spike in well-being immediately following both marriage and cohabitation as couples experienced a honeymoon period with higher levels of happiness and fewer depressive symptoms compared to singles. However, these advantages were short lived.

Marriage and cohabitation both resulted in less contact with parents and friends compared to remaining single – and these effects appeared to persist over time.

"We found that differences between marriage and cohabitation tend to be small and dissipate after a honeymoon period. Also while married couples experienced health gains – likely linked to the formal benefits of marriage such as shared healthcare plans – cohabiting couples experienced greater gains in happiness and self-esteem. For some, cohabitation may come with fewer unwanted obligations than marriage and allow for more flexibility, autonomy, and personal growth" said Musick.

"Compared to most industrial countries America continues to value marriage above other family forms," concluded Musick. "However our research shows that marriage is by no means unique in promoting well-being and that other forms of romantic relationships can provide many of the same benefits."

Does Lisa Swayze (wife of actor Patrick Swayze) Have Super Powers?

Lisa Niemi Swayze has written a book about her experiences loving and losing her husband Patrick Swayze after a 21 month battle with pancreatic cancer. The book is titled: Worth Fighting For.

One review I read said:

"...The memoir reveals just how much one woman can change, when forced to confront the horrors of illness and the inevitability of those final moments. We witness the transformation of Lisa from a terrified creature who begs her just-diagnosed husband ‘Please don’t make me do this’, to the superwoman who refuses to give in, confronts every grim aspect of his nursing care and brings him home to die..."

They were two exceptional and normal people, as we all are, who loved each other and did the best they could. I confess I find it unfair to Lisa, and to the rest of us, to characterize her as a "superwoman." This makes it seem that her efforts came from some special source of rare super power she has access to, as opposed to the power that naturally derives from love and empathy - and that she is in a different class of being than the rest of us who live in the realm of illness with our partner.

What do you think?

One Illness; Two Victims

This comment just came in on an older post. I think it is well worth re-posting:

Married 36 years and the last 7 years my husband has been a paraplegic due to a mass on his spinal cord. There are TWO victims here. Him and I, and I feel like I am paralyzed right in the middle of my life. I wish I were the one dying or dead. I was not happily married to him before his surgery and I was waiting for the kids to at least be in college before I left the marriage. Now I am stuck taking care of a man who hit me and verbally abused me up until the day he got sick. Now I do it to myself because I am too much of a wimp to leave him. Thank you for letting me say this out loud, my mom died 6 years ago and I have no one to hear my pain.

I have found readers of this blog to be very sensitive to the complexities of living with illness as part of your relationship. Solutions can be elusive. Problems are complicated and simple advice that usually has the word "just" in it (like - "why don't you just leave him" or "why don't you just eat less and get some exercise) often isn't substantive enough to be of real help.

What thinking can you offer the writer of the comment above? What have you learned from your experiences as ill partner or well, caretaking partner that you can share with this author?