Felt with the Heart: A New Year's Wish

" The best and most beautiful things in the world cannot be seen or even touched- they must be felt with the heart."
Helen Keller

Wishing you lots of beauty and love in the New Year. Thanks for tuning in to my ramblings.

Best Patient Posts of 2010

Leslie at Getting Closer to Myself organized a blog carnival of the posts various patient bloggers sent in. Have a look here.

Not a Holiday Stress Article

I really don't like articles about dealing with holiday stress. You know them. The lists of: Top 10 Things You Can Do to Get Through the Holidays without Stress; Banish Holiday Stress Forever; and even the hyperbolically punctuated Holiday Stress!!!!!

Some advisers recommend the "be kind to yourself" approach. You know -- the 3M's: massage, meditation, and mood elevators (of the non-pharmaceutical kind, like music and pleasant aromas). A lot of the advice has to do with avoiding family confrontations while consuming excessive amounts of alcohol and sugar,which will not only create irreparable breaches, but leave you feeling like a lonely, bloated, self-loathing toad. Not bad advice -- but family breaches and that toad-like feeling can creep in no matter how hard you try. Holidays can be lightening rods for attracting old wounds, losses, grievances, and shame. And no "10 Tips" can prevent some debacles from happening.

Now, I acknowledge that there are probably many people who can get through the holidays without having to watch endless episodes of South Park or The Twilight Zone. There are probably many for whom the holidays are truly joyous and a time of family, friend, and neighbor good will. There are many principled people who get happiness from serving others during the holidays. I applaud all of you.

This year I really stepped into it. Not only do we have an endless stream of high calorie social engagements, but we are starting on some long overdue (by 30 years) home renovation. We are in the purging stage -- trying to recycle almost all our possessions: furniture, kitchenware, and all manner of assorted items that just fall into the stuff category.

The scenario is complicated by the fact that I'm a tosser and Richard is a keeper. I'm ready to heave into a dumpster unopened boxes that have been taking up prime basement real estate for decades. Richard needs to go through each box and resort items that either have sentimental value or some possible future use. I don't blame him....but it does make me a little crazy (and probably vice versa).

This year, I should have read a few of those holiday stress advice articles. I had a bit of a pain relapse; and I am annoyed with myself for not taking preventative measure (the 3 Ms) and for not being hardy enough to resist the firing up of those beastly pain neurons. So there's that nasty self-censuring voice working hard to get my attention, in competition with my attempts to get ahead of the pain curve before it really accelerates.

Richard can't go against his nature and purge faster. Nor can I totally extricate myself from holiday activities. But what Richard (my sweetie) does is remind me that this pain blip is not forever, and that it will never be as bad as it was before we had tools to control it. And he empathizes. He gives me love and compassion and rooibos tea.

That's the holiday spirit I want to receive and to give.

What are your holiday challenges and joys? And what does holiday spirit mean to you and your partner?

How Close Do You Get?

It's the start of cold, flu, sniffle, cough, wheeze, drip season. We may be stocking up on echinacea and Sambucol and neti pots. At the first sign of a throat tickle we may start gargling with salt water. Nasal congestion may drive us to boil water seasoned with eucalyptis drops, cover the rising steam and our heads with a towel, and breathe in the pungent fumes. We may even have a few containers of hand sanitizer displayed around the house to be used after touching...well, anything.

Why such precautions? Because we may live with a partner whose immune system is compromised. Sometime the compromise is so severe, that the partner may barely have a white blood cell left to combat infection. Or the ill partner may already be dealing with complicated symptoms, ones that don't signify immune system danger, but are strong enough that a cold, on top of the other condition, could push him over the edge

So, when you or your sweetie has some form of chronic condition, and the well partner comes down with a cold, what do you do? Do you avoid each other for the duration of the cold? Does the cold-holder stay at a friend's house? Do you talk, but not touch?

I remember one winter when my pain condition was on an unstoppable wild ride, and Richard came down with a hacking, dripping cold. Having Richard read to me or stroke my hair or hold me was just about the only source of solace I had during those dark days and nights. But the thought of coming down with the flu, on top of daily pain, was just too much to risk. So we set up a buffer zone between us. We agreed that the bedroom was mine alone, and that we would not be in the same room at the same time.

Two days of this isolation did little for his cold but served mostly to shroud me in deeper melancholy than I was used to. Not only did I cry over my physical pain, but I felt such an encompassing sense of loneliness. My pain was augmented by gloom, and I had lost my best buddy and comforter. And Richard was also suffering. It broke his heart to see me so bereft, and he had lost his main caretaking job -- one of the few things he could actually do to soften my pain.

We decided that hugging was more important, and more powerful, than bacteria. We crossed the buffer zone and held each other. I didn't get sick, and chances are, the comforting contact was more healing and preventative than gallons of antibacterial disinfectant.



What do you do when the well partner comes down with a cold? or flu? Do you take any precautions? Do you keep apart? Do you carry on as usual?

Is Marriage Good for Your Health? Maybe...Maybe Not

Excerpts from a New York Times article entitled: IS MARRIAGE GOOD FOR YOUR HEALTH? about research findings on the impact of relationships on health:

"Scientists have continued to document the “marriage advantage”: the fact that married people, on average, appear to be healthier and live longer than unmarried people. Contemporary studies, for instance, have shown that married people are less likely to get pneumonia, have surgery, develop cancer or have heart attacks....."

"New research is increasingly presenting a more nuanced view of the so-called marriage advantage. Several new studies, for instance, show that the marriage advantage doesn’t extend to those in troubled relationships, which can leave a person far less healthy than if he or she had never married at all...."

"One recent study suggests that a stressful marriage can be as bad for the heart as a regular smoking habit. And despite years of research suggesting that single people have poorer health than those who marry, a major study released last year concluded that single people who have never married have better health than those who married and then divorced...."

"...a second marriage didn’t seem to be enough to repair the physical damage associated with marital loss. Compared with the continuously married, people in second marriages still had 12 percent more chronic health problems and 19 percent more mobility problems."

"... results suggest that there are important differences between men and women when it comes to health and the style of conflict that can jeopardize it. The women in this study who were at highest risk for signs of heart disease were those whose marital battles lacked any signs of warmth, not even a stray term of endearment during a hostile discussion (“Honey, you’re driving me crazy!”) or a minor pat on the back or squeeze of the hand, all of which can signal affection in the midst of anger....Men were at risk for a higher coronary calcium score, however, when their marital spats turned into battles for control. It didn’t matter whether it was the husband or wife who was trying to gain control of the matter; it was merely any appearance of controlling language that put men on the path of heart disease."

"The solution....isn’t to stop fighting. It’s to fight more thoughtfully. “Difficulties in marriage seem to be nearly universal,” he said. “Just try not to let fights be any nastier than they need to be.”"

"...research shows that some level of relationship stress is inevitable in even the happiest marriages. The important thing...is to use those moments of stress as an opportunity to repair the relationship rather than to damage it. “It can be so uncomfortable, even in the best marriages, to have an ongoing disagreement,”... “It’s the pit-in-your-stomach kind of thing. But when your marital relationship is the key relationship in your life, a disagreement is really a signal to try to fix something.”"

Thanksgiving Travel

If you're traveling over the Thanksgiving holiday period, I hope your experience is just like this:
(if you can't see the full screen, you can click on this link and view it on YouTube




Happy Thanksgiving and safe travels.

Spinal Cord Injury and a Wedding

From an article on CNN.com:

A bride-to-be is joking around with her girlfriends at her bachelorette party and is pushed into a swimming pool. She hits her head and suffers a C6 spinal cord injury with paralysis from the chest down. She can use her arms and wrists, but not her hands. She is committed to adapting as well as she can and to leading a vigorous and full life. Her fiance is committed to her. They plan on marrying as soon as her complicated insurance situation is resolved. He says, "We are built to last.

When I read about a situation like this I am horrified and amazed. Horrified at the fates who can inflict such cruel tricks on us. And amazed at people's resilience and ability to continue on with a sense of possibility.

I also can't help but wonder about what the future holds for this couple.

What do you think they need in order to make it as a couple?

Grand Rounds is Up at Nurse Ratched's blog

Grand Rounds is a collection of posts from the health care blogosphere. This week Nurse Ratched is hosting. It's a good read (and one of mine is included).

Early Love and Illness

A recent story in Parade entitled, The Only Time We Have Together is Right Now, is about the joy of a couple in their thirties who recently married. The male partner was diagnosed three years earlier with a rare and aggressive form of cancer.

"Bahar and Nick met at a bar in October 2008 after a University of Illinois football game in Champaign, where he was living. She noticed that her pal Matt had brought along “this really cute, well-dressed, quiet guy.” He wasn’t drinking, so she teasingly asked him why. “I’ve got cancer. I can’t,” Nick replied. “Can I buy you a drink?” Unfazed by his answer (“I’m an oncology pharmaceutical sales rep. I see people with cancer every day,” she says), Bahar shot back, “Really? That’s the worst pickup line ever!” He laughed, and they started talking"

They dated, fell in love, and decided to marry, as his health was declining.

"Wish Upon a Wedding (WUW), a new nonprofit that stages ceremonies free for couples in which one person has a serious illness or has had a life-altering experience. Explains WUW founder, San Jose, Calif., wedding planner Liz Guthrie, “You shouldn’t have to put your life on hold because you’re sick.” ....In her application, Bahar wrote, 'I don’t know what Nick’s current life expectancy is, but I do know I want him to be my husband forever.' "

Here are the questions this story raised for me:

• When serious or chronic illness is part of your relationship from the outset, or early on, what does it take to sustain Bahar and Nick's kind of live-and-love-in-the-moment joy?
• Is that even possible; or do the demands and constraints of illness eventually chip away at that joy and turn it to complacency and sadness?
• Or does illness act as an accelerant, clearing away the debris and pushing love to the foreground?

Did you and your partner get together when one of you already had an illness? Or did the illness appear soon after your relationship solidified? What has been your experience about the impact illness has on love and joy?

Finding Connection Within the Whirlwind

I don't know about you, but more and more of the people I know are getting sick.

I have a dear friend who was recently diagnosed with acute myeloid leukemia. Another friend's 65 year old husband is sliding quietly into end stage Alzheimer's. And there are too many women friends who are being treated for breast cancer.

The sadness of it is a weight we all carry, mostly separately, and at special times, together.

I grow more and more aware of how the battering ram of illness smashes down hard on couples and leaves partners flattened and afraid, without instructions for how to use the strength of relationship to build resiliency for facing the trials of illness.

The flattened partners are quickly scooped up by the medical whirlwind, and their own voices are lost in the loudness of clinical talk about diagnosis, surgery, chemotherapy, prognosis, trials, and options. There is hardly room to breath, let alone time to connect and remember the power of love and shared memories. There is no time to grow into awareness of being a couple, of not really being alone, when isolating words like cancer, stroke, heart attack are surrounding you.

I can remember times when I felt that the world had shrunk to just two points - me and my pain. There was no horizon, no tomorrow. Just this terrible duality of self and hurt. I thought nothing could reach me. Then Richard would come home from work and we'd sit on the couch in silence, leaning against each other. The world would shift, sometimes only for a few minutes. I felt accompanied. That there was a shoulder next to mine helping me carry the weight of pain.

There can be so much energy in the couple connection. Even if the relationship has grown dull, illness can sometimes compel alliance. When faced with a frightening diagnosis or mysterious symptoms, be silent for a moment and look into each others' eyes. Hold hands. Maintain contact within the whirlwind. Use each other as anchor points.

Have you been able to find moments of connection with your partner? How do you do it?

The Bagel Man

I have a black and white photograph, entitled, "The Bagel Man," hanging in my kitchen. It's a picture taken in Israel 30 years ago of a rotund man about 60 years old wearing a wrinkled, greyed apron. He is standing in a doorway and all around him are bagels -- on countertops, hanging from a rope above the doorway, in a basket on his arm. His expression is one of acceptance. Every time I look at it I am reminded of my father. Today is the one year anniversary of my father's death.

Every Sunday my father would get up early and go to the bagel place -- that's what we called it, the bagel place. It was actually much more than that. It was a full fledged Jewish delicatessen, one that only existed in Queens (NYC) and now only in my memory. It had acres of display cases filled with smoked fish, roasted turkeys and chickens, corned beef, tongue, cheeses, pickled herring in cream sauce with onions, pickled cows feet, sour pickles, chopped liver, stuffed cabbage, kasha varnishkes, cheese cake with cherries on top, chocolate and cinnamon babka, Entemanns donuts, marbled and chocolate covered halva, and a curtain of salamis hanging from the ceiling.

My father bought bagels (plain and salted), lox, cream cheese, one white fish, and a babka or donuts or halva. When he got home, my mother would lay out a display of all his bounty on the dining room table. It was Jewish, still life, performance art. And we all knew our roles - to eat with gusto, share the New York Times and randomly comment out loud on what we were reading (I nabbed the magazine section), and all this while watching football or tennis or baseball in the background.

The eating was part of the art and we each had our own genres. I sliced a bagel in half and pulled out the doughy interior to make more room for piling on different ingredients: first a healthy slather of cream cheese; then a very thinly sliced onion and an even more thinly sliced tomato; finally I draped two strips of lox over the top. It is the most delicious thing I have ever eaten.

Today is one year since my father died. It feels at most 5 months. You were my nourisher Dad. Thank you for your wonderful generosity and presence. I miss you.

The Holidays, Already!

I don't know about you but I'm already feeling the holiday "dreads." Invitations, cholesterol masquerading as food, rivers of alcohol, late nights. I can feel my pain receptors begin to ignite just thinking about how to take care of myself over the next few months.

Other than the abandon and the gluttony, I also worry about letting others down if I have to bow out of an engagement I committed to because of pain. And I worry about letting myself down if I overdo things and risk doing what I know (but don't want to acknowledge) might cause a pain surge.

I do lean on Richard to be the voice of sound judgment. I ask him to provide the balance when I am strung out on the line between yearning to ignore risk and just indulge, and avoiding all social activity because I fear a relapse.

But I don't make it easy for him. When he is the voice of caution, I resist. I say, "It's the holidays, after all. Why can't I act like a normal person once a year?" When he is the voice of indulgence I shrink away and hide in a corner. "I can't possibly go out three nights this week. I'll crash."

So I hope maybe this holiday season I can find the balance between quarantine and hedonism.

What are your holiday challenges? How do you and your partner get through the holidays?

Celebrating the Ordinary

Richard and I took a mini-vacation last week in New York City. I grew up there but hadn't been back to visit for a long time. A few attempts had to be canceled because of a relapse in my pain condition.

Growing up in NYC meant that I calibrated my energy level to that of the City. Walking fast, talking fast, always scanning the environment for dangers and treasures, absorbing large chunks of stimuli without gagging -- all these became routine for me. And when I return to NYC, I effortlessly fall into these rhythms. Whereas New England feels a bit too tight and California feels a bit too loose; NYC is a perfect fit.

This means that it is easy for me to slip into automatic pilot mode and slither invisibly through the crowds and see only a blur of concrete and color around me.

But this trip was special -- because it didn't have to be canceled. I spent four inspiring days walking the streets, holding my sweetie's hand, and paying attention to the world all around me -- a world that in the past was muted by familiarity, and in recent times was a world eclipsed by pain.

This trip was a gift, and I noticed everything. Here's just one half hour:

10:15 am -- I get on the subway heading downtown.
10:20 -- A group of five men, dressed in mariachi outfits, board the subway car, play guitars, and sing Guantanamera.
10:30 -- I get off the subway and start walking towards Union Square where there is a marvelous farmers market.
10:35 -- I walk by a large, squat man shouting with a classic New York City-Tony Soprano accent into a cell phone: "If you don't get that f-ing sh-t to me by f-ing tomorrow I'll blow your f-ing head off."
10:40 -- I continue walking and look across the street where I see three people walking and laughing. One of them is wearing a costume rabbit head with large cartoonish ears.
10:45 -- I meet Richard in Union Square and we share a perfect apple.

What a glorious, ordinary, pain-free day in the City! Celebrating the ordinary not only gives me a lift in the moment, it replenishes the reservoir of great memories that help get me through the more painful days.

Would You Choose to Get Involved with Someone Who Has a Serious Illness?

A recent New York Times Modern Love column was about a woman who fell in love with a man who, after a few dates, told her he was HIV positive. He was also much older and a recovering alcoholic and had a teenage daughter. None of these factors were obstacles to her love and commitment. They married. He had one severe episode of AIDS-related pneumonia that almost ended his life. He recovered, and they continue loving each other. In fact, the presence of his illness helps them fight relationship complacency and not take each other for granted.

So here are my questions for you:

Did you know your partner was ill when you committed to the relationship?

If yes, did that make you hesitate?

What made you decide to commit any way?

If you knew then what you know now, would you have made the same choice?

If you chose to end the relationship early on, after finding out about your date's illness, why did you make that choice? Did you ever regret it?

Memorial for My Father

This weekend the extended family is making a pilgrimage to the Catskill Mountains where we spent summers as kids. We city kids were so lucky to have two months every year to get lost in the woods, dig up earthworms as bait for fishing expeditions, swim in an isolated mountain lake, have campfires with roasted marshmallows and silly songs, play endless games of canasta and hide and seek....and be a family together.

We are returning to the place of many of our best times to remember my father. It's a testament to how well he was loved that relatives from all over are gathering. His rabbi said he was an "adam shem tov," a man of good name. He was the most good man I know. He is why I married a very good man.

He taught me about happiness and he taught me how not to throw a baseball like a girl.

I love you Dad and will always miss you. Have a good passage.

Second Opinion

Many decades ago, when my father was in his thirties, he began having a problem with his eyes. His vision was OK, but every time he went outside, his eyes teared up and spilled a steady drip of water until he went back inside. He decided to consult an eye specialist. That doctor told him he would be blind within a year. He decided to get a another opinion. The second specialist gave him the same exam the first one did and told him to wear sunglasses when he went outside. He did and had clear vision until he died at age 84.

Several years ago, I noticed a hard bulge on my abdomen. My primary care doctor referred me to a surgeon. He examined me, said it was a lipoma and suggested it be removed surgically. The "oma" part scared me and I asked him what lipoma meant. He said it was a benign fatty tumor. I asked him what would happen if we left it alone. He said, "Probably nothing, It might go away or remain." I then asked him, "If it's benign and there's no harm in doing nothing, then why recommend surgery?" He said, "I'm a surgeon. That's what I do."

When Richard has a symptom, his tendency is to watch it, see what happens over time, and if it gets worse, consult a doctor. My tendency is to call a doctor when I first notice something awry. I figure that the doctor has a perspective I don't, and I'm just getting information and am not binding myself to a course of action. But once I do get the professional opinion, it's hard to deny it and return to ignorance. So I wind up with more anxiety and more medication than Richard does. And he's pretty damn healthy.

So --How do you know when you're in denial and ignoring something critical? How do you know when you're overloading something minor with too much anxiety and attention? And how do you know when to accept a doctor's advice and when to ask for a second and a third opinion?

Two Blog Carnivals

This month's Pain-Blog Carnival is up at How to Cope with Pain. Have a look.

Also, Leslie at Getting closer to Myself hosted a patient carnival on the question: What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

Unwanted Help

How do you deal with unwanted help?

The good intentions of friends and family in offering emotional and tactical help can sometimes be welcome, and can sometimes be just another burden to deal with when you or your sweetie are suffering from illness or pain.

When I was very ill, I had a friend who would call every day to ask how I was doing and then launch into her stories about pain, in which she generally featured as main character. It was wretched enough to have her use my suffering as a platform for her narratives. It was doubly wretched to be asked, every day - "How are you doing?" That question was just salt in the wound and served not to comfort but to remind me that I was not doing well at all, and that I had no idea when or if my pain condition would change.

I had another friend who called or emailed most every day and simply said, "I'm thinking of you." That was lovely. It felt like the sweet touch of a cool hand on my desperate brow. Not intruding. Not insisting I engage in any way. Just a brief loving contact that I knew could be extended should I need that.

Many people just don't know how to talk to someone who has a serious illness. Out of their own nervousness (and for some, out of their blind self-involvement), they ask too many questions, tell too many stories, offer to do too much. These offers, even if meant benevolently, become extra weight for the ill person to carry. When all your resilience is tied up in just holding your own self together, offers and questions can be the extra straws that break you down instead of fortifying you.

So how do you deal with family and friends who load you down with well-intention extra straws?

Firstly, be aware that this is happening. Don't just respond out of hospitality or habit, and then wind up entangled in a conversation you don't really want to have.

Secondly, know that your taking care of yourself takes precedence over another's hurt feelings. If you need to shield yourself from another's well-intentioned but unhelpful involvement, you must do so, or pay the price later in increased tiredness, pain, depletion.

Thirdly, communicate. People will inadvertently intrude. They don't know what is helpful and what is not. And what is helpful will change over time. Communicate - in person, by email, through a trusted third party -- and let friends and family know what your needs are. Do you want to be left alone? Do you want people to stay in touch, but not to expect any response from you? Do you want people to send you articles or other resources they have found about your condition? Do you want visitors to not drop by without advance notice? Do you want help with specific activities (e.g. drives to medical appointment, grocery shopping, child care)?

Fourthly, know that these efforts come from love. You can appreciate and express gratitude for the love, while setting limits on the involvement.

What stories and ideas do you have for letting your family and friends know what you want and don't want from them?

Illness as Catalyst?

Sorry for the short absence. Richard and I were helping my mother transition into an assisted living facility and sort out her medical needs. About six months after my father's death she hit the "alone" wall. Not loneliness, which can be tempered by social activity - but alone-ness. She became afraid.

She and my father were not very compatible. She experienced his questions about her activities as attempts to control her, and he experienced her wordless, stone-faced responses as either not having heard his question or as not having done the deed he was asking her about. So he would ask again, and again, with increasing impatience -- especially after he became physically disabled during the last two years of his life. And she would get stonier and stonier. You can see the endless, disappointing (to me) loop.

At the six month post-death point, it wasn't that she missed him or had regrets that disturbed her quietude, it was that she started becoming afraid of being alone. The night-time what-ifs intruded more and more into her awake time. What if I fall? What if I can't reach my cell phone? What if my alert necklace doesn't work? What if there's a hurricane? What if something happens and there's no one there?

So, we helped her move into an assisted living, where she is much more tranquil.

As we helped her settle in, I wondered: Must illness exacerbate the destructive behavioral and emotional patterns couples used during their healthier years? Does illness need to be the final stage on which the partners enact the same old script that locked them into battle or silence in healthier days? Or can illness be the catalyst that bulldozes the destructive relationship loops and spirals and clears a path to more nurturing interactions?

What is your experience? Can illness change relationship patterns for the better; or does illness just exacerbate the pre-existing negative behaviors?

Interspecies Love

Those of you who know me through this blog know that I am a sucker for inter-species love stories. I guess I believe that if love can cross the species boundary, having a partner who forgets to refill the ice cube tray or leaves socks on the living room floor open is less than inconsequential.

Here's another great story -- about an orangutan and a dog. enjoy!

This Week's Grand Rounds is Up

Grand Rounds is a collection of the best posts from the health care blog world. This week it is hosted by Inside Surgery. Have a read.

Dual-Illness Couples

It can be all consuming to deal with one's own illness. What happens when both partners are sick?

Cindy had been living in a cloud of ill defined, mercurial symptoms for years. Sometimes she felt too exhausted to comb her long brown hair. Sometimes moving or being touched made her retract in pain. Sometimes she ran a low fever for days without any apparent reason. In fact none of her symptoms had an apparent reason to her doctor. He prescribed Prozac, exercise, and a referral to a psychiatrist.

Cindy suffered her symptoms with fear and bravery; but her doctor's negation of her reality, his condensing it into a ball of dismissal and tossing it to a shrink crushed her. It was her husband, Bob, who mustered the energy and rallied Cindy to keep searching. They did, and found the right doctor who could give a name to her condition - fibromyalgia. Being taken seriously was as important to Cindy as was finally having a treatment path laid out for her. Cindy focused on taking care of herself, while Bob loved and encouraged her, did most of the chores, and worked full time. Things seemed to be working out for the first time in 4 years.

Then Bob got injured on the job. A piece of heavy equipment fell on him and he suffered serious injury to his back. He had two surgeries and grueling sessions of physical therapy. His love was there for Cindy, but his energy and ability shifted to attending to his own care.

Cindy and Bob did well when only Cindy was impaired. Now that they both had serious limitations and pain, their world bounced off its axis, and there was no one else around who could reposition it properly.

House chores were undone. Laundry, dishes, and all kinds of clutter filled the rooms that used to be tidy and inviting. Luckily Bob still received disability payments and insurance from his job.

Pain and fear made them both short tempered, and the only target for the spillover was the other partner.

Eventually, a friend suggested they consult a care manager to help them put resources in place - home health aides, visiting nurse, meals on wheels. This friend also organized a visitation rotation list among members of her synagogue so that twice a week Cindy and Bob were visited by someone who could bring new social energy into the house.

Cindy and Bob still struggle. They miss their old life and bemoan their current one.

Do you have any suggestions or advice for Cindy and Bob? Have you been in the situation where both partners were ill? What was that like for you?

Patients for a Moment is Up

This is a collection of blog posts written by people living with illness about their experience. It's a great read. It's being hosted by Leslie at Getting Closer to Myself.

Reclaiming the Joy

Illness takes so much from us. Yes, we can learn about caring and how to distinguish between the essential and the merely important. We can learn about acceptance and compassion for ourself and for our partner. We can become students of our body and listen with a sharper consciousness to its rhythms.

But illness takes so damn much from us. It takes the blissful freedom of ignorance. It takes spontaneity. It takes carelessness. It smashes all the assumptions we hold about moving without pain or fatigue. It takes mindlessness about time passing. It takes intimacy without forethought.

So, how does one reclaim some of this lost territory? How can you find the joy?

For me, I find it in motion. When I have a good day and I can go on a glorious disneyland of a hike in the hills of Marin or New Hampshire, joy rides on my shoulder. When I have a good hour, I drive to the ocean and breathe. When I am hurting and tired of hurting, I sit side-by-side with my sweetie and catch up on episodes of Lost or The Wire.

The joy is not in the grand parade; it's in the moments.

What are your moments of joy?

Post-Illness Readjustment

Do you know any couples who have had this experience?

She develops cancer. Or he has a heart attack. One is seriously ill and the other moves into serious caretaking mode. Whether it's love or resilience or luck, they not only manage the illness effectively, they manage to relate to each other in empathic ways. The love they started with seems to expand under the pressure of illness. In fact, they may even say that illness showed them strengths in each other that were invisible before.

Then normalcy sets in. Maybe it is ushered in by recovery or by adaptation to a new way of living and relating, with illness.

One would imagine that the couple would welcome some stability and would take their illness-induced lessons and apply them with more love and vigor in this next phase.

But the lessons don't hold, and the relationship falls apart.

They start picking at each other. Bickering over the insignificant -- refilling ice cube trays, shutting the computer off when not in use, leaving wet towels on the bathroom floor.

Things escalate. The arguments get louder. Old grudges surface. Dues for favors done years ago are expected to be repaid now.

Or maybe things get quieter. So quiet that soon there is nothing left to talk about. And no interest in creating new experiences.

The couple who did so well during illness can't cope with the new normalcy. They become like soldiers who discovered their aliveness in battle and can't return to the averageness of civilian life.

Do you know couples like this?

Couple Faces Separation in Nursing Home

As I continue to mourn my father's death eight months ago and witness my mother's slow, seeping decline in her assisted living facility, I am becoming acutely aware of not only mortality, but of the gnarled and hazardous path you have to walk to get to the end of life. How many people get to die quietly, in their own beds, holding the hand of their beloved? The story below about an elderly couple facing separation from each other because of institutional regulations and efficiencies makes me very afraid.

Do you have stories to tell about this issue? What are your thoughts about your own mortality road? How do you want your end to be? These are questions we rarely say out loud, or write. They frighten me as I type them. But I am interested in your thoughts.

Here is an excerpt from the story by Max Harrold in the Montreal Gazette, June 25, 2010

Couple Survived the Holocaust; Now Faces Separation at Nursing Home

"They survived the Holocaust, but now Elena and Francisc Basch - married for 65 years - face the prospect of being separated in the Côte de Neiges nursing home where they live in adjacent rooms.

The case highlights the difficult choices faced by long term care facilities and the often disorienting consequences for frail residents. The couple's son says separating them - both his parents have Alzheimer's - would be too traumatic. The nursing home says it is legally entitled to do what it feels is best, based on each resident's needs.

The Baschs, both age 90, have different stages of the illness that impairs memory, thought, speech and can lead to complete helplessness. The Montreal Jewish Eldercare Centre says Elena must be moved to a different ward as soon as possible because she needs a more advanced level of care, her son Max Basch, 59, told The Gazette this week.

"They cannot survive without one another," explained Max, from his home in Tenafly, N.J. His mother's more advanced condition makes the familiarity of her surroundings critical and her husband in the next room is a big part of that, he said.

"They always hold hands," Max said. "They kiss each other. They're this incredible, great couple in theirs 90s. When he went to the hospital for a few days, she said 'Maybe I can go to the hospital and check in on him and cook for him.' She doesn't realize exactly where she is but she knows they are together."

WHAT BRAIN SCANS CAN TELL US ABOUT MARRIAGE

From the June 4, 2010 New York Times, by Tara Parker-Pope. The article doesn't look at marriages in which one (or both) partner has an illness, but it's still food for thought.

WHAT BRAIN SCANS CAN TELL US ABOUT MARRIAGE
"....academic researchers have become increasingly fascinated with the inner workings of long-married couples, subjecting them to a battery of laboratory tests and even brain scans to unravel the mystery of lasting love.

Bianca Acevedo, a postdoctoral researcher at the University of California, Santa Barbara, studies the neuroscience of relationships and began a search for long-married couples who were still madly in love. Through a phone survey, she collected data on 274 men and women in committed relationships, and used relationship scales to measure marital happiness and passionate love.

Dr. Acevedo expected to find only a small percentage of long-married couples still passionately in love. To her surprise, about 40 percent of them continued to register high on the romance scale. The remaining 60 percent weren’t necessarily unhappy. Many had high levels of relationship satisfaction and were still in love, just not so intensely.

In a separate study, 17 men and women who were passionately in love agreed to undergo scans to determine what lasting romantic love looks like in the brain. The subjects, who had been married an average of about 21 years, viewed a picture of their spouse. As a control, they also viewed photos of two friends.

Compared with the reaction when looking at others, seeing the spouse activated parts of the brain associated with romantic love, much as it did when couples who had just fallen in love took the same test. But in the older couples, researchers spotted something extra: parts of the brain associated with deep attachment were also activated, suggesting that contentment in marriage and passion in marriage aren’t mutually exclusive.

“They have the feelings of euphoria, but also the feelings of calm and security that we feel when we’re attached to somebody,” Dr. Acevedo said. “I think it’s wonderful news.”

So how do these older couples keep the fires burning? Beyond the brain scans, it was clear that these couples remained active in each other’s lives.

“They were still very much in love and engaged in the relationship,” Dr. Acevedo said. “That’s something that seems different from the Gores, who said they had grown apart.”

Indeed, if there is a lesson from the Gore breakup, it’s that with marriage, you’re never done working on it.

What Do You DoWith Your Anger? continued

In my last post, I wrote about the power of anger. In this post I write about some of the ways anger can be handled so that it has a better chance of being heard and responded to.

Here are some of the options I use. You decide what's best for you.

Pick your battles. Decide what you can let pass, and what you really need to address. And when you address it, preface it by saying something like, "I need your help and some uninterrupted time with you. I have been holding something back and I think I need to share it with you. It may be hard to hear, but if I don't talk about it, that will be worse. This is all in the spirit of clearing the air. When would it be a good time to talk?" By framing it in this way and by including your partner in deciding when to talk, you give him some sense of control and reduce the instantaneous defensiveness which could otherwise erupt.

Write it down. In your journal. In a letter you don't send. Write fearlessly without stopping. After you see what you have written, you can pick out the pieces that can form a more coherent message. That's the message to share, not the rant.

Talk it out with a neutral party -- a friend or a counselor. This is the safe place to unleash full bore emotion. When it's run its course, extract the message to share with your partner, find a quiet time, and frame it well.

Shout it out. Find a time when you are alone. Go to the room in which you feel the safest. Shout out your anger. Say all the things your feel and think, no matter how hurtful and ugly they sound. Shout out: "I hate you." "You're a (expletive of your choosing) ." "I can't go on like this anymore." Drain yourself. If you're concerned the neighbors will hear you, shout into a pillow or into your mattress. Then extract the key messages and set up a time to talk with your partner.

The purpose of these options is not to strip out all emotion from your message. You should not neutralize all your energy and become robotic. The purpose is to get clarity.

Anger is a loud emotion and can drown out wisdom. Anger can drive you to win the battle and lose the peace. If you no longer care about your partner and only want to obliterate him and any chance of reconciliation, then blast away. But if you want to be heard, if you want your partner to try to behave differently, if you want to build a bridge, then blasting won't get you there. Do what you can to divest your rage of its venom. Then approach your partner, with a cleaner anger, with clarity about what you need, and with the love that makes you want to stay connected.

What do you do with anger?

What Do You Do With Anger?

In Shakespeare's The Tempest, Caliban hates Prospero. Caliban, born savage and deformed by the witch who used to inhabit the island, is now a slave to Prospero, the new ruler and severe taskmaker. In this soliloquy Caliban holds nothing back:

All the infections that the sun sucks up
From bogs, fens, flats, on Prosper fall,
and make him By inch-meal a disease!

This is anger, in all its graphic, metaphoric brilliance. While we may not be as expressive as Shakespeare, illness can make us damn angry.

The ill partner can get rabidly angry at the illness that has so constricted her life. She can get angry at her well partner for still being able to go out into the world, unfettered by pain or weakness. She may also get exasperated at her well partner for making her wait until he finishes watching the baseball game to bring her food or help her to get to the bathroom. She may be silently enraged at him for all the things he can still do that she cannot.

The well partner may be furious at his ill partner for changing the relationship contract without prior approval by him. He didn't sign up for years of caretaking and even less for losing the strong woman he hoped to travel the world with.

Both partners are bound to get angry at the health care system for all the ways it makes them wait or feel insignificant or suffer unnecessary complications. This form of anger can become a full time job. Rage at the system can easily overwhelm the more fragile tenderness that both partners yearn for from each other.

How can both ill and well partner deal with these forms of anger, and others? Squashing or denying it doesn't make it disappear. It only condenses it into rock hard pellets that lodge deeper down inside the body and slip out unexpectedly to cause more piercing damage. Giving free reign to anger is like unleashing a perpetual tornado. For a moment it can seem magnificent, but it will ultimately destroy everything you value.

So, what is the middle ground between silence and vengeance? When you are in the grip of anger, all you want is to unleash it, maybe even to cause some damage to the person you feel has been damaging you. Or silence it with a heavy hand. But this will not get you what you want. What you want is validation, acceptance, understanding, and reparations. To get even some of that, you need to see your anger not as a lightening bolt you hurl at your partner, or as a fire that burns you from within, but as a bridge that needs to be rebuilt between the two of you. Something broke, and it needs to be mended, by both of you, together.

In the next post I will share some of the options I use.

What do you do with your anger?

Grand Rounds

is up at Better Health. It's a good collection of this week's posts from the health care blog world.

My Mother, My Partner???

Usually when I write about couples and illness I refer to the two primary, romantic partners (with or without any romance). But when it comes to the ups and downs of my pain condition, my mother is still my main squeeze.

My mother spent the last five years largely laying down on the couch in her apartment, eating cottage cheese. Her main activities were going food shopping on Saturday nights and watching Law and Order and its derivatives. She moved into an assisted living facility a few weeks ago and, to our surprise and delight, has been reborn.

My mother listens to the daily live music that's played in her new home. And the same "gentleman" keeps asking her to dance. She's getting the reputation of being "the one who dances." Not bad as a new identity at age eight-three. And, not so coincidentally, my pain level, which peaked a few weeks ago when her anxiety over this transition was high, has now dropped.

I am a bit embarrassed that after so many years of meditation, milk thistle & co-enzyme Q10, psychotherapy, and disentanglement, my nervous system is still hard wired into my mother's emotional states. My head is leaking insights about our relationship and my historic role as her source of a good sense of self. I can kundalini breathe myself into a state of transcendence, but I can't seem to get beyond the slim fiber of umbilical cord that still ties us.

We are a dysfunctional couple. I love her. But had the choice been mine to make, I would have been her BFF and not her daughter.

Who are you entangled with? How does that affect your health or the health of your partner? And how have you tried to extricate yourself from knots that keep you tied down?

Grand Rounds

is up at The Examining Room of Dr. Charles. It's the weekly collection of posts from the health care world. It's always an interesting read

Heroism Continued: My Mother's Transition

Richard stayed in Florida for a week - completely being there for my mother, a woman who isn't his mother and who is very difficult to spend too much time with -- while I slowly climbed out of a pain relapse back home.

During that week, they visited three assisted living facilities. My mother truly liked one of them, and she does not like many things. Richard went back to the one she liked and asked the owner every question on every checklist I emailed him. He did all the financial maneuvering, including having them remove the carpet in her apartment and replace it with wooden floors. He got all the papers signed and helped her pack up her belongings.

Within six days after he arrived, my mother moved into the next phase of her life in an assisted living facility.

He did all this with no whining and while shielding me from descriptions of the worst of her behaviors. When I told him he was amazing or heroic, he said with utter sincerity, "I don't see what you're seeing, but thanks for the compliment."

He makes me want to be a better person.

Thank you for listening to my Richard admiration for two posts. I know not everyone has as supportive a partner, whether you're ill or not. And, honestly, we didn't always know how to be genuinely supportive to each other. It took love and several years of couples therapy to lower our issues and learn how to speak and listen to some hard truths.

And btw - my mother who barely left her condo for two years; who had no social contacts other than my father (who died six months ago) and her brother; whose main activities were watching Law & Order on TV and berating my ailing father for what she experienced as his attempts to control her -- spent her first evening in her new home listening to the live music that happens every evening, and dancing for a half hour with a "gentleman."

Heroism Doesn't Always Make it to the 6:00pm News

How's this for heroism?

My father died six months ago. Since then my mother has been living alone in their apartment and, until recently, has been enjoying the solitude. Recently she began having panic attacks and crying to me on the phone that she just can't stand being alone any more.

Now this may be a form of grief reaction or a realization of the great existential aloneness of being mortal. Whatever the roots, she simply does not want to live alone. She wants to move into assisted living.

The tangle is that my mother's neediness and my pain condition are wired into each other. The needier she is, the more ripples and burps I feel. Recently my pain has shot up from ripples to rip tides.

Richard and I have tickets to fly today to visit her and begin the process of finding suitable assisted living facilities. I am not in great shape, but she can't bear any postponement. Normally I would grit my teeth (after taking a double dose of pain meds) and soldier through.

But that's not heroism. That's stupidity. Here's the heroism.

Richard offered to go visit her solo, see assisted living facilities with her, and stay until she's feeling less panicky and more like there's a plan in place. She's not his mother, and while he loves her, he doesn't always like her. But he is willing to do this for her and for me.

To me, that's heroism.... and love.

Do you have stories of heroism you'd like to share?

Grand Rounds is Up

at the Sterile Eye. The collection is a visual feast. It's a collection of this week's posts from the health care world. Have a look.

Is Marriage Good For Your Health

From an article in 4/12/10 New York Times by Tara Parker Pope. The essence of the article is that a good marriage is very good for your health; and a bad marriage is very bad for your health. The permutations and nuances of these findings are very interesting. Here are some excerpts from the article:

Is Marriage Good for Your Health?

"...scientists have continued to document the “marriage advantage”: the fact that married people, on average, appear to be healthier and live longer than unmarried people. Contemporary studies, for instance, have shown that married people are less likely to get pneumonia, have surgery, develop cancer or have heart attacks. A group of Swedish researchers has found that being married or cohabiting at midlife is associated with a lower risk for dementia. A study of two dozen causes of death in the Netherlands found that in virtually every category, ranging from violent deaths like homicide and car accidents to certain forms of cancer, the unmarried were at far higher risk than the married."

"....Several new studies, for instance, show that the marriage advantage doesn’t extend to those in troubled relationships, which can leave a person far less healthy than if he or she had never married at all. One recent study suggests that a stressful marriage can be as bad for the heart as a regular smoking habit."

Birthday Celebration

We celebrated Richard's birthday this weekend. It was one of those decade birthdays that end in a zero. The immediate family consisting of brothers, in-laws, and cousins spent the weekend together in a rented house near Pt. Reyes National Seashore, about an hour and a half north of San Francisco.

The house was a rustic palace with multi-tiered terraces and giant windows overlooking the beautiful nothingness of sky, clouds, trees, and marshland. The wood stove kept us warm and we all pooled our culinary talents and kept ourselves very well fed. On Saturday Richard and I did a 10 mile hike through oceans of spring wildflowers. We couldn't take a step without stomping on some buttercups or wild irises.

For me, the greatest joy was that I could give Richard a pure gift of this glorious weekend, during which he could be the center, not my illness or my health.

Happy birthday sweetie!

How Do You Deal With Intimacy When You Hurt Too Much?

And not only when you hurt too much, but when you are tired all the time, and your meds dull your libido.

A sex therapist I interviewed for my book (to be released in Jan 2011) about couples and illness said that not all intimacy has to be: "Insert penis in vagina and shake." Intimacy at its core is about giving and receiving physical pleasure, ideally accompanied by emotional closeness. This latter recipe can be achieved in many ways. Sexual touching can happen anywhere on the body.

But sometimes the well partner may just want intercourse. What then? And sometimes the ill partner may want intercourse, but is physically unable to engage. What then?

The path to a resolution will be different for each couple. Each couple's sexuality and emotionality is unique to them. But the path to getting to some resolution requires open and honest communication. No matter how hard it is to talk about such intimate matters.

If, at the end of the day, you still want to stand, or sit, or lay together - you have to tell each other what feels good and what doesn't. And you have to talk about what you miss and what you want, and how you might get it, together. And what about giving each other permission to get what you need outside the relationship? is that OK?

If you don't talk to each other about your intimacy needs, they will not go away. They can turn into an invisible barrier that can erode your sense of closeness in other areas.

I think this is one of the most difficult terrains for couples to navigate. What have been your experiences of dealing with the intimacy side of living with illness in your relationship?

Do You Play Around With Your Medications?

I have such an ambivalent relationship with my meds. They are my hero and my accuser.

They accuse me of still living with a chronic pain condition. Their little pink and yellow and sometimes blue fingers point at me and say, "You thought you escaped, that pain would be no more. But pain is just underneath the surface of the numbness we provide. Mess with us and you invite pain to step up."

And my meds are my hero. They protect me from my true nemesis -- pain. They are always there for me. And when I let them, they do their job, ceaselessly, heroically.

So why do I keep messing with them. I continually try to get them down to the next lower level, and then the next lower level. I cut them into halves and quarters. Then I scrape off molecules from the quarters until there's only a few nano-particles are left. The more I can pare away from my meds, the more healed I feel I am.

Not true. Maybe in some alternate universe, but not in ours. I always drop down a teeny bit too low and smack up against a relapse. And the relapse isn't reparable simply by going back up on meds by one step. The relapse soon becomes a cascade of pain that requires that I go way back up to the top of the medication mountain.

So I climb back up, take the highest level of meds, and am grateful that they work to take away the pain. But I carry my pick-ax with me. On the ready to chip away at the med mountain as soon as I stabilize.

Meanwhile, Richard is calling out words of encouragement to me to. "Don't worry, you'll get better."

Do you play these games with your medications? What are your reasons?

This Week's Grand Rounds

is up at the Health Business Blog. Have a read.

The Guilt of Illness

The sick partner feels guilty for being sick. For changing the game plan of the relationship. For not being able to do the things s/he used to, things ordinary couples get to do without a second thought. For having a hard day. For eating up savings that should have gone to the kids' college fund or retirement.

The well partner feels guilty for being well. For being in a different place than the ill partner. For being able to still socialize, do sports, even have some fun. For not being able to make the ill partner better. For feeling angry, afraid, and exhausted. For wishing this would all stop and get back to the way things used to be.

What's the benefit of carrying so much guilt? Not much.

Guilt doesn't act as a bridge, creating a conduit between two struggling people. Guilt can't repair health. Guilt doesn't bring laughter into the room.

Guilt turns off the lights and shuts the door.

Two guilt-ridden partners means two people hunkered down in their separate corners, hiding from the light in each others' eyes. Each person, alone, feeling bad over something they had no hand in making.

What's the way out of guilt?

Stand up, hold each other, and jointly say, "This sucks." Not, "I'm bad," or "You're bad." but rather: "The situation we are in is terrible. We are both so sad that this is changing the future we had planned. I'll be with you when you are hurting. I'll give you space when you need it."

Where do you feel guilt? How does it affect you? What do you do about it?

This Week's Grand Rounds Collection of Health Care Blog Posts

Check it out at Dr. Anonymous. Many diverse and interesting posts.

Would You Place Your Ill Partner in a Nursing Home?

I recently heard a story about a couple in which the wife has had Huntington's Disease for twenty years. They married in their early thirties and she was diagnosed five years later. Over the course of the last two decades, each exacerbation has left her at a lower level of functioning. For the past ten years, she has lost her ability to do any self care, to transfer herself from bed to toilet and back to bed, and to speak. Over the past five years, her cognitive abilities have become compromised.

Her husband has been her steadfast caretaker for all this time. He modified their house to make it handicap accessible. He found aides and home health care providers to help with her care. He took her to try many avenues of treatment. He was the primary parent. And he worked at a full time job.

Now, after twenty years, he realizes he just can't do it any more. He has his own physical conditions, and he is bone weary and wants more joy in his life as he enters his own final decades. He is afraid that if he keeps being the primary caretaker, he will get sick and be unable to help his wife at all.

He decided to place her in a high quality nursing home - for her sake and for his.

This is one of the toughest issues couples dealing with debilitating illness face. What do you think about this man's decision? Have you made the decision to place your ill partner in a nursing home or other long term care facility? Would you ever consider doing this?

Two Blog Carnivals of Interest

Check them out:

a patient centered blog carnival is up at Getting Closer to Myself.

a carnival about pain related issues is up at How To Cope With Pain.

Do You Let Your Partner Read Your Journal?

I know many people who are living with illness who keep a journal, and several well partners who do also.

The writers tell me that they are able to express themselves, unfiltered and unchallenged, in their journals and feel enlightened and purged. They can write nasty things about the nasty doctors who insinuate that they are malingering or depressed. They can write about the heartache that attaches to all the things they are no longer able to do, alone or with the partner. And they can write secret thoughts - about wanting it to all be over, or rage at the ill partner for being ill or rage at the well partner for being well.

I kept a journal during my first year of illness when my pain condition was out of control and seemingly undiagnosable. I wrote like an avalanche. Words exploded onto the page. At times it felt as if a switch in my consciousness had been shut off and language streamed out from a source more limbic.

I wrote about my mother's voraciousness and my father's sedateness. I wrote about Richard's endless kindness and my crushing ambivalence over wanting him to do even more and fearing that one more request to hold my while I cried would finally shatter him. I wote about my yearning for Paris and my resistance to stepping even a few feet outside and facing the unbearable contrast between my limitations and nature's perseverance.

Sometimes people give children a present of a dreamcatcher -- an object made form sticks and strings crafted into the shape of a web, decorated with beads and feathers. It is used as a charm to protect sleeping children from nightmares. My journals were my dreamcatcher. They bound my terrors so that I could focus on ways to try to lessen my physical pain.

At the end of every day, I showed Richard the pages I had written. I showed him so he could keep pace with me and so that I wouldn't have to say any of the things I wrote about out loud. It was a form of intimacy.

Do you keep a journal? What does writing a journal do for you? And do you ever share it with your partner?

I Really Hate Valentine's Day

Valentine's Day is a complicated holiday for couples who are dealing with chronic illness or pain. It's supposed to be a day of champagne bubbles and dinners at romantic restaurants, chocolate and sweet kisses.

But what if alcohol and chocolate aggravate your symptoms and pain keeps you from being able to sit for too long, especially in a restaurant? How can you celebrate Valentine's Day with your sweetie? Do you even want to or do you prefer to let it slide by as just another day?

I was feeling rather bleak that my pain picked Valentine's Day to spike. Instead of cuddling with my partner, I was curled around a heating pad and focusing on all the things we would not do that day. And when I get in that state of tunnel vision, it's hard for me to extract myself.

Richard pointed out that even if we sat of the couch, side-by-side with the heating pad and the TV remote control, we were still being together. In some ways, without all the imposed artificiality of hearts and flowers removed, we could focus on what was truly important - not the symbols, but our love and tenacity.

He could switch channels while I switched temperature settings, and know that we have abiding love, and don't need Hallmark cards to prove it.

So I hope you all find your way to appreciate love for each other, on Valentine's Day, and any other day you choose.

Finally, an Article about the Caregiver

No news to most of us who either are the caregiver and know how powerful and endearing and demanding a role that is, or are the ill partner who witnesses the caregiver's fatigue. But this article in the New York Times articulates well how vital it is, especially for health professionals, to pay some attention to the caregiver.

Offering Care for the Caregiver

"......For all our assertions about the importance of caring in what we do, doctors as a profession have been slow to recognize family members and loved ones who care for patients at home. These “family caregivers” do work that is complex, physically challenging and critical to a patient’s overall well-being, like dressing wounds, dispensing medication, and feeding, bathing and dressing those who can no longer do so themselves.

Many of these caregiving tasks were once the purview of doctors and nurses, a central component of the “caring professions.” But over the past century, as these duties increasingly fell to individuals with little or no training, doctors and even some nurses began to confer less importance, and status, to the work of caregiving.

It comes as no surprise, then, that physicians now rarely, if ever, learn about what a family caregiver or health care aide must do unless they are faced with caring for their own loved ones. We doctors don’t know or aren’t always fully aware of what it takes to care for a patient after we leave the room......"

"........“Normally everyone is always focused on the patient, patient autonomy and the patient’s wishes in terms of the ethical standpoint,” said Dr. Virginia L. Hood, chairwoman of the Ethics, Professionalism and Human Rights Committee of the American College of Physicians and one of the paper’s authors. “But family caregivers are an important part of the health care team, too. We need to value these caregivers better, think about their needs and consider how they are central to the patient’s care, not just someone who happens to be pushing the wheelchair.”

Of particular importance is understanding how the work of caregiving can also give rise to a new set of medical issues: those of the caregiver....."

Grand Rounds is Up

Check out Grand Rounds, a collection of health care blog posts, at Musings of a Distractible Mind.

Ailing Couples One-Up each Other

From an article on MSNBC about the competition and shortened fuses that can happen when both partners in a couple fall ill with the flu. As I read it I couldn't help but think of all of us who don't get over our illness in a couple of weeks. We have to continuously craft new ways of relating to our partner, and to ourselves.

It's an interesting read -- Sniffle Wars: Ailing Couples One-Up each Other

"When a partner falls ill, empathy can have an expiration date. And in relationships that are taxed or struggling to begin with, it comes sooner rather than later."

Do You Feel Like You Have Contact With Your Partner Even After He/She Has Passed?

I realize for many this is a woo-woo topic.

But today I had a conversation with the man who was cutting my hair, and we found ourselves discussing this topic. He had lost a partner to cancer several years ago. For months after the death, he experienced what he believed were connections with his deceased partner.

They had decided years ago to put a gate on the fence that enclosed their yard. The gate had a key, and they frequently joked about how they were destined to lose the key. Not surprisingly, one day the key disappeared, not to be found anywhere. Then after the partner died, and after every inch of the house had been searched for the missing key, guess what? One evening when my hairdresser came home from work, there was the gate key, lying smack in the center of the living room rug -- obvious to anyone who entered the room.

Other people I know have reported the favorite books of the deceased partner suddenly found on the kitchen table or on the floor in the middle of the garage. Others have told stories of electric appliances going on and shutting off without this-worldly intervention. And others have spoken about electric lights flashing in patterns during the dinner hour or when a favorite TV show is on.

This is more than feeling an ongoing connection or having the partner live on in memory. I think many of us recognize that experience.

But have any of you had what might be called extra-sensory experiences or physical manifestations of your deceased partner's presence. Like I said at the beginning, this is a topic way over the line of comfort for many, a topic that extends into the twilight zone... but I do wonder and would like to know.....

What Makes Relationships Work?

From an article in the Guardian in which Kate Figes', author of a new book, Couples: The Truth, discusses her research into modern relationships:


"In the course of her research, Figes cheerfully demolished a number of long-standing myths about ­couples. One in three marriages ends in ­divorce? Not true. The risk of divorce varies hugely according to age, class and length of marriage. Once you've survived the first seven years, the risk of divorce drops dramatically. Marriage kills passion? Not true. People in long-term relationships have more and better sex than single people. A lack of commitment is to blame for relationships breaking down? Not true. On average, couples stick together for six years before taking steps to bail out."

"A key component of successful ­relationships, she discovered, is flexibility. "It comes through very clearly from the interviews: the most successful ­relationships are flexible enough to change and adapt. Nobody is perfect, and no relationship is perfect. Unless you can change your expectations, you're bound to be terribly disappointed."

"Another fundamental ingredient for success seems to be honesty. Figes nods vigorously. "Being honest about who you are and what you want is ­vital. Otherwise, how do you each know where you stand? Without real honesty, you don't stand a hope in hell."

"You have to learn to ask yourself, 'what is it about me that's making me feel this way?', not just blame things on the other person."

"Bad relationships are clearly harmful in many ways, but one of the things I've learned from writing this book is the overwhelming power of good that comes from good relationships – mind, body and soul. We don't give that nearly enough credit."