In Sickness and In Health: A Place for Couples Dealing with Illness

The Shape of Grief

2009-10-31T09:54:00.000-07:00

I've been thinking a lot about grief lately. Back in the days of my psychology training, we learned that grief follows a predictable pattern and happens in progressive stages:
Denial, Anger, Bargaining, Depression, Acceptance (based on the work of Kubler-Ross.

That's not the tune my grief over my father's recent death dances to. For the first week after he died, I was just plain exhausted. This was a completely physical experience. Being with him in the hospital for ten hours a day for two weeks with all chakras wide open left me empty. Once I got home, I lived on the couch.

I guess I expected that I would cry most of the time. Dramatic meltdowns of wracking sobs eventually tapering down to trickles and sniffles. Or at least an hour's worth of steady tears running down my face. Didn't happen.

What did happen was that I would stumble over some flicker of a memory from his hospitalization at random, incongruous moments. While riding the exercise bike or cooking scrambled eggs. I would suddenly be abducted by this memory - staring into his blue eyes; wiping slow tears from his face; hearing doctors use words like failure and damage; watching his chest rise with his final three breaths.

These snatches of memory would prick open some swollen balloon of sadness, and deep sobs would would burst out. Sobs from the chest, that lasted a minute, maybe two. Then back to pedaling or cooking.

It's been a little over two week since he died, and even though I was by his side, I still don't know how to know that he's dead. I don't know how to let his death change my world. Is this strange?

Thinking about grief has also led me to ask what are the social allowances for grief.

We are expected to grieve over a death or a divorce. But we are not given a mourning period for serious illness. After diagnosis, we are expected to jump on the treatment treadmill and keep running after the magic pill. My father was praised for being such a fighter and for not complaining about his infirmities. Is it ok to cry about losing the pieces of life illness takes away? Is it ok to mourn for the trip to Paris you won't get to make or the mountains you'll no longer climb? Is it ok to cry because illness had made you too tired or pained to love your family and friends in the way you want to?

Must we be uncomplaining soldiers fighting the good fight? Or can we make room and rituals for grieving over the losses of illness.

Grand Rounds is Up

2009-10-27T13:25:00.001-07:00

This week the collection of posts from the health care blogosphere is up at Codeblog: Tales of a Nurse. Have a read.

A Fable: The King & the Lost Family

2009-10-26T13:40:00.000-07:00

This is a story that came to me as I sat next to my father's hospital bed. I have no idea where it came from. It is not a story I had ever read or heard. I just told it to him as he lay alert but with eyes closed. I said, "Dad, I have a story to tell you." This is what came out.

A Fable: The King and the Lost Family:
An Homage to Jewish Mysticism and The Rocky Horror Picture Show

A family, father, mother, daughter, and son, are driving together in a car. They are in a remote area, heading to the ocean for a vacation. It is night time and a fierce rain is falling. The father can barely see the road through the rain pounding on the windscreen. Around the next bend the father spots the lights of a great house. He decides to drive there and see if the family can find shelter for the night.

The father knocks on the door. The family waits, shivering in the cold relentless rain. Finally, they hear footsteps and watch the doorknob turn. The door creaks open and a man invites them inside.

The man is wearing the most beautiful velvet purple cloak. On his head is a gold crown adorned with rubies and emeralds. His smile and the tender look in his eyes tell the family that they are safe from the storm. He explains to the family that he is the king of this region and they are welcome to stay with him in his castle for as long as they like.

The family enters into a great hall. They look around and see tapestries covering the walls that seem to tell a story of a hero’s journey. The ceiling looks like it is made of obsidian flecked with gold. It sparkles like a clear winter night sky. The air holds traces of lavender and fallen rose petals. A soft warm breeze dries their clothes and whispers words of comfort into their ears.

The king suddenly claps his hands. Servants dressed in gleaming white uniforms enter the hall. Each servant carries an enormous silver platter with a domed cover on it. At a signal from the King each servant uncovers his dish. The sweet and pungent aromas entice the family. Each family member finds exactly what they most hunger for. The father finds roasted meat. The mother finds sweet potatoes covered with a marshmallow cinnamon glaze. The daughter finds a salad of heirloom tomatoes, golden beets, and fresh basil. The son finds crisp, tangy chicken wings. The servants set the platters down on a long oak table.

The family eats until they can eat no more. A knight dressed in a red satin doublet quilted with chain mail points toward a simple wooden door. The family passes through the door and finds themselves in a vast library. The walls are covered with shelves that hold books from floor to ceiling. The family circles the room slowly and sees books by their favorite authors glow as if a light were shining on them.

The King is seated on a purple throne near the east wall of the library. He beckons to the family. They notice that there are four chairs near the King. The father sits on the blue chair; the mother sits on the brown one; the daughter sits on the green one; and the son sits on the yellow one.

The King begins to tell them about his kingdom. “My kingdom is far away, but very close to your heart,” he says. “It is a land that has known only peace for centuries. It is a beautiful land with sweet, cool blue rivers, fields of tall green grass; soil that is deep brown and so fertile that it grows all crops; and a yellow sun that warms the people with love and kindness.”

The King’s voice grows quieter and quieter. It becomes a lullaby the family has known all their lives. His kingdom turns into a dream they had when they were little children and had forgotten.

To the family’s surprise, the King asks the father if he would like to journey with him to his kingdom. The King says to the family, “There is no need for you to worry –the father will only be gone a short while and you will join him soon enough. The father will build a big house that will some day be your new home. And while the father is gone you can remain in my realm as my honored guests.”

The father kisses his family good-bye and stands next to the King. They vanish, as if they stepped through a rift in the air.

In an instant, they arrive in the Kingdom. The father sees all the wonders the King had described - the rivers, the grass, the fields of thriving crops, and the golden sun. The father also sees something, way off in the distance, something the King had not spoken of. He sees people slowly approaching, singing wordless songs. He knows these people but he cannot yet say their names.

The King leads the father to a hill. They climb the hill and on the top the father sees a large flat square of land within a grove of eucalyptus trees. From this land, the father can see the far away ocean and can even smell the salt water in the air. The father however is puzzled. He does not know what to do on this land. The King explains, “This is to be your new home.” The people are coming to help you build your house here.”

As the people draw closer, the father begins to recognize them and know their names – Nana, Poppy, Hilda, Davey, Shirley, and more. They are bringing cedar planks, tools, nails, glass – everything the father needs to build his house. These people welcome the father with long hugs and beautiful smiles. The father and his people begin the building.

The father is so happy in this Kingdom and so absorbed in his work that he looses all track of time. He cannot tell whether seconds or years have gone by when one day, he looks north toward the ocean and sees newcomers walking towards his house, his house which is now seven stories high, with eighteen rooms, and huge windows that look out in
all directions.

The newcomers walk slowly, as if they are lost and searching for signs. As they draw closer, the father realizes he knows their names and calls to them. They run in the direction of his voice.

Grand Rounds is Up

2009-10-20T09:26:00.001-07:00

It's at Sharp Brains this week. Have a look.

Also check out Patients for a Moment at Duncan Cross. This is a collection of posts from patients.

My Father in the Hospital

2009-10-18T10:19:00.000-07:00

We, the family, wander the yellow corridors of the ICU, searching for answers. The doctors and nurses turn away as we pass them, looking hard at the clipboards and folders they carry. They know that eye contact will mean a prolonged hallway conversation that will take them away from their real job, their medical job. They know that we will batter them with questions for which no answers exist in this world. Questions that begin with, "What's the probability that....?" or, "How much longer...," or, "how do we know when to stop..."

We hear the sounds of the machines as they beep steadily while dripping brown and white fluids into his veins. We hear the sharp and sudden blast that means one of the many numbers on the monitors we watch with vigilence has gone out of range. Some noises make the nurse come into the room, while others bring a whole platoon armed with new machines. After eight days we understand the rhythm of the machines. They become background music to this dance of dying.

I stand by his side holding his hand. I lean over him stroking his brow. With a soft voice, I take him on journeys to happier days. I tell him about the sweet, cool blue river that flows through him and around him, connecting him to all the healing forces in universe. I tell him he is surrounded by love - love from the people who stand around him now, and love from everyone who has ever loved him. I tell him that all that love enters his body with each breath and makes the waters of that blue river even sweeter.

On October 15 at 10:40 am, my father died. I, my brother, my husband, and Maisie, the woman who had been his caretaker for the past year, were by his side. There were three breathes and then no more.

His rabbi said that he was an "adam shem tov" - a man of good name. He said his death was a holy one.

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.

My Father is Moving On

2009-10-11T19:42:00.000-07:00

He is very ill and yet still shows his loving essence. It's been a terribly sad and a terribly sweet time. Does that make sense? Our thinking and emotions have such a clarity to them. Luckily we all have a quick and twisted sense of humor we can rely on to bring a smile to his face and a breath of clean air into the hospital room.

Looks like we're saying good-bye to him.

Thank you for your good thoughts - we need them.

I'm taking a bit of a break

2009-10-10T07:46:00.000-07:00

My father is the hospital ICU. My husband, brother, and I are by his side. I'm going to take a hopefully short break from blogging. Send good thoughts our way. And thank you all for reading and for your wonderful, honest comments.

A Pain Flare Up

2009-10-01T17:30:00.000-07:00

This week I had what many pain communities call a "flare up." My father is very ill and that tipped me over the line.

But that phrase, flare up, is too polite for me. I think a spike in pain deserves a more militant, aggressive, even violent nom de guerre. Because it is a guerre (French for war), after all. A fight in which pain plays dirty.

This enemy, pain, sneaks across my threshold, disguised at first as a wee bit of pressure. Then once it has positioned itself deep inside my core, it digs in and brings out its weapons.

It has long spears and axes, clubs and tiny daggers. It pounds and stabs in an irregular beat, which makes it unpredictable and dangerous. Soon the intervals between beatings diminishes. The pain becomes constant. Nowhere to hide.

Pain's most foul weapon is fear. Fear is the guerrilla warrior. It hides inside the pain, like a stealth poison, and then slowly infiltrates. It fills all the spaces pain does not reach. It latches onto the breath and grows with each inhalation. It squeezes the heart into a tight ball and fills the minds with images of a dark, bleak forever.

I despise pain; yet it is part of me. I want to wake up one day and find a note on my pillow from pain. The note says, "So long and thanks for the ride." Then I get to go back to a life of blissful ignorance where pain is a dying dream that some alternate version of me once had.

The Day of Atonement: This One is for You, Dad

2009-09-27T17:13:00.000-07:00

Tonight begins the Jewish holiday of Yom Kippur. It is the most important holiday of the year and really should be identified as a holy-day. The focus of this period is entirely on your relationship with God, the Divinity, the Spirit, and on asking forgiveness for the ways in which you let Him/Her down, and yourself. It is a time of inner contemplation. And whether you believe in a Higher Power, or in the need to ask forgiveness, it's pretty powerful to have one day to devote to thinking about who you are in connection to the Bigness that surrounds us all.

My father is in the hospital, in the ICU. He's 85. He might pull through this as he has the past five incidents that required hospitalization. But he might be at he point where the fabric is so frayed that every insertion of the needle to repair it just causes more damage.

I'll be thinking of him tonight. And of my relationship with him over the past 50 plus years. His basic goodness was the DNA for my model of the universe. I hope the universe returns him to his family. And I pray the universe carries him gently, always.

I love you, Dad

Grand Rounds at Residency Notes

2009-09-22T11:26:00.000-07:00

This is the 6th anniversary of Grand Rounds, Colin Son at Residency Notes has put together a great collection of health care posts.

While you're at it, Six Until Me is hosting Patients for a Moment, a collection of posts contributed by patients. Have a read.

And the Pain Carnival is up too.

45,000 Deaths a Year Linked to Lack of Health Insurance

2009-09-21T16:00:00.000-07:00

45 to 50 million Americans are uninsured. That's a big number and hard to get one's mind around it. A recent study from Harvard Medical School turns this number into a tragic and sadly logical reality:

45,000 people die each year in the US because of lack of health insurance coverage.

I usually don't blog about health policy, but this study was so stunning, I had to write about it. Not only does lack of health insurance contribute to 45000 individual deaths, but one has to wonder -- as a result of this tragedy, how many couples and families are destroyed?

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Here's an excerpt from an article in the New York Times by Reed Abelson:

"Researchers from Harvard Medical School say the lack of coverage can be tied to about 45,000 deaths a year in the United States — a toll that is greater than the number of people who die each year from kidney disease.

“If you extend coverage, you can save lives,” said Dr. Steffie Woolhandler, a professor of medicine at Harvard who is one of the study’s authors. The research is being published in the December issue of the American Journal of Public Health and was posted online Thursday.

The Harvard study found that people without health insurance had a 40 percent higher risk of death than those with private health insurance — as a result of being unable to obtain necessary medical care. The risk appears to have increased since 1993, when a similar study found the risk of death was 25 percent greater for the uninsured.

The increase in risk, according to the study, is likely to be a result of at least two factors. One is the greater difficulty the uninsured have today in finding care, as public hospitals have closed or cut back on services. The other is improvements in medical care for insured people with treatable chronic conditions like high blood pressure.

“As health care for the insured gets better, the gap between the insured and uninsured widens,” Dr. Woolhandler said.

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Here's a link to the actual report:
Health Insurance and Mortality in US Adults

Tips for Telling A Potential Partner About Your Health Situation

2009-09-15T16:16:00.000-07:00

The piece below is from a site called Zikkir, which seems to be an aggregator of news stories.

I'd be interested in hearing your advice about how to tell a potential partner about your health situation.
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Here's the article:

8 Tips for Telling Your Significant Other a Health Secret

by Marti Trgovich, Health.com

1. Practice what to say
Before you drop a bomb on a potential mate, rehearse your speech with a trusted friend or visit a therapist to talk it through, suggests Ken Robbins, MD, a clinical professor of psychiatry at the University of Wisconsin–Madison.

“It’s good to have somebody as a sounding board in a situation like this,” he says. “How you handle this is not something your partner is likely to forget.”

Laurie Davis, an online dating expert based in New York and Boston, suggests asking a friend what sounds most intimidating about your condition and getting his or her advice on how to smooth it over. Getting a second opinion can help you decide how much to say (and when and where to say it), and running through your script a few times can make you more comfortable sharing your story.

“You don’t want to overwhelm your partner but you want to be sure to give him or her all of the important facts,” Davis says. “You should definitely practice before you tell your match, or you’ll most likely fumble through the conversation uncomfortably.”

Mark Snyder, a 32-year-old writer from New York City, used to dread telling a new boyfriend that he was a recovering alcoholic. “I don’t think I was ever able to shake off the feeling I was springing the information on him, usually when we were either out to dinner and he wanted to order a bottle of wine, or at a party where alcohol was introduced,” he says. “I often blurted out, ‘Oh, I don’t drink. Sorry.’”

That changed, however, as he got used to talking about his condition. “As time went on, and I got more comfortable with this side of my life, so did the ease with which I told a man not to expect a tequila-scented smooch at the end of the night,” he says. “I realize my blurting-it-out style was my own insecurities about sobriety. I celebrate it now.”

2. Never tell on a first date
“Never tell someone on a first date,” Davis says. “The results will never be favorable.”

Dr. Robbins seconds that, especially if you’re worried that your health secret “is likely to define you before the person has gotten a chance to know you at all.”

That doesn’t mean you should lie—just let your partner get to know you first. “[Revealing too much too soon] may color how your partner sees you,” Dr. Robbins says. “It defines you before you’re ready to be defined.”

Jenny*, a 25-year-old graduate student from New York, had a breast augmentation when she was 19. “I don’t really bring it up, not when I’m first dating people,” she says. “But I’ve had people ask and I’m always honest with them. I wouldn’t see a reason to keep it a secret, especially if we’re getting serious.”

If you’re worried that your health secret might be a deal-breaker, you’ll want to ‘fess up by the fourth date, says Rachel A. Sussman, LCSW, a New York City therapist and relationship expert. That way, if your secret does make a big difference, you won’t have wasted too much of their time—or yours.

“Of course it can be painful, but if that’s the case, it’s better to know before you get too involved,” Sussman says. “It’s complicated if you withhold it and they find out too late. Dishonesty can ruin a potentially good relationship.”

Jill*, the 33-year-old from New York City, is currently in a long-distance relationship. However, she hasn’t told him about her bipolar disorder —yet.

“Too much too soon is not a good thing…. [But] I truly believe when you share a life with someone, you need to be in it together,” she says. “Men go bald; women gain weight after pregnancy. It’s not all roses and Champagne.”

3. Be casual yet confident
So exactly how does one reveal a secret without just blurting it out? “It’s hard not to kill the mood with your health secret, because it’s probably not something that can be easily segued from a topic you would normally discuss,” Davis says. She recommends a conversation bridge, such as, “I feel like we’re heading in a great direction, so I wanted to tell you something.”

Just don’t overdo it: “You don’t want to frame this in a way that ends up making a bigger deal of something you don’t want made into a big deal,” Dr. Robbins says. In other words, make your delivery as drama free as possible.

Allison*, a 30-year-old marketer from Baltimore, tries to casually tell dates about her multiple sclerosis.

“Usually I’ll work it into another aspect of our conversation,” she says. “It’s a lot easier to tell someone I have MS as a side note in a conversation than to sit down and have a formal discussion focused solely on MS.”

However, even a casual, well-prepared speech doesn’t always meet with success.

“One guy just clammed up and didn’t want to say anything or go anywhere because, in his eyes, I might get hurt,” Allison* says. “And another guy became very controlling and tried to tell me what I should and shouldn’t be doing for my health. Um, you’re not my doctor, dude.”

Allison’s dates probably have their heart in the right place. “They’re trying to be helpful because they care about her,” Dr. Robbins says. He suggests that she have a confident, straightforward response about how she would like them to react; something like: “I don’t see this as something that defines me—but if I need help, please leave it to me to ask.”

4. Don’t have this conversation in bed—or anyplace you associate with intimacy
Although this is a good guideline to follow when dealing with all types of relationship secrets, there’s only one instance in which it is a hard-and-fast rule, Sussman says: “Don’t wait until you’re naked in bed with someone to tell them you have an STD.”

That’s true for any condition, Davis adds. But Dr. Robbins notes that if your health secret is a sexually transmitted disease, you’re going to have to open up to someone sooner rather than later.

“If it’s something that’s going to have a direct effect on your partner, it’s something you’re going to want to talk about sooner, as opposed to an illness that isn’t contagious,” Dr. Robbins says. “If it’s something like hepatitis C, you really do have to talk about that very early.”

Amy, a 29-year-old graphic artist from Chicago, jokes that hepatitis C is the only thing she has in common with Pamela Anderson. But she’s serious when it comes to telling boyfriends about her illness, which she got through a blood transfusion at birth.

“There is less than a 3% chance of transmission within a monogamous relationship, but I’ve always been truthful and upfront about it, whether I ended up in a sexual relationship with someone or not,” she says. “They have a right to know.”

An ideal place to tell someone about your health secret—whether it’s a communicable disease or any other condition—is a park, Davis says. Just make sure there’s no one within earshot.

“Do not tell your partner during intimacy. Telling your partner your health secret means you are opening up to them, trusting them, and becoming more vulnerable,” she says. “The place you choose to tell them should reflect this.”

5. Seek out relationships online
If you tend to meet potential partners through online networks such as Facebook or Match.com, you shouldn’t hint in your profile that you’re concealing a health secret. However, if you’re nervous about rejection or misunderstandings, you might be more comfortable dating someone with similar health issues.

There are many niche sites that cater to people with specific conditions, and they’re a great way to be up-front with potential mates who are in the same boat, Davis says.

6. Know when to give your partner space
Even if you do your best to deliver a snag-free speech, it’s possible that there could be an awkward moment. “[If that happens], say, ‘I can tell by your expression that this is a lot to digest and I completely understand, and I’ll give you the time and space to do that,’” Sussman says.

Then, offer some physical distance but stay in contact, Davis says. “Give them the following day to breathe and think,” she suggests. “Call them on the third day if they haven’t reached out to you. Let them know that they are still on your mind and you can’t wait to see them again.”

7. Don’t take rejection personally
“A good person will listen and be kind and not judge, but if [your health secret is] something they can’t live with, that doesn’t make them a bad person,” says Sussman. “It just makes them a bad match.”

And there can be multiple reasons for a rejection—many of which have nothing to do with you at all. “If your mother was an alcoholic and you date someone who’s an alcoholic, you might have to make a choice that it’s not healthy to be involved with someone in recovery,” Sussman says.

Besides, your perfect match will accept you no matter what, Davis says: “If things were going well up until the time you told them, keep in mind that they rejected your health condition, not you. At the end of the day, it means that they were not the one.”

8. Accept support
Tiffany Sanchez Conover, 28, a store manager from northern Indiana, settled into a deep depression after her grandmother died. She slept all day, stopped eating, and became socially withdrawn—even with her husband. Still, she kept her depression hidden, because she wanted to “figure it out on my own.”

“[Eventually] I felt like I had to tell him because I could feel the strain it was placing on our relationship,” she says. “A person can only take so much of their spouse not wanting anything to do with them before they start assuming the worst, an affair.”

Tiffany’s husband was hurt that she hadn’t told him earlier, but he was glad she finally confessed. “After I told him, he was as supportive as could be,” she says. “He would stay up late to talk with me just so I wouldn’t feel lonely late at night, even though I’m sure he really wanted to go to bed.”

It’s especially important for married couples to be open to avoid hiccups in the relationship, Sussman says. “In healthy marriages, people lean on each other and are honest with each other,” she explains. “You can never lose by being honest.”

Tiffany knows that now: She and her husband recently went through a series of failed fertility treatments after finding out she likely cannot have children on her own. “I probably share too much now,” she says, laughing. “But it works for us. If I didn’t tell my husband how I felt about it all every day, I probably would end up depressed again.”

A counselor also helped Tiffany to get through the initial rough patch. Therapy and support groups —whether online or in person—are excellent options, according to Sussman. “Name the illness and there’s a support group,” she says. “If you go to your supportive community, you’ll hear stories of how people have handled these things in the past.”

Has Your Partner Made You Laugh?

2009-09-12T12:20:00.000-07:00

Laughing together makes everything better -- if only for a few moments. But once you have a good laugh, the effect is not only while you're laughing, but also when you retell the story to others, and when you remember it later by yourself. If it's a really good laugh, it becomes part of the ongoing connection you have with your partner - a shared smile that the two of you can resurrect any time, often with only a single word or phrase.

For Richard and me, the phrase is, "They're making a break for it."

Several years ago I went through a very hard period. Bad pain. Bad attitude. I couldn't work and didn't want to leave the house. I was sunk in misery, waiting for a new medication cocktail to kick in. I was Eeyore, moping and wandering aimlessly from one room to another.

One afternoon as I was heading upstairs, I noticed 9 black socks draped randomly on several stairs. Now, Richard and I have gone mano-a-mano many times about his tendency to leave objects strewn about the house. But this was over the top and inexplicable.

I asked him to join me at the bottom of the stairs and explain the mystery of the strewn socks. He said, "They're making a break for it. Trying to join their comrades in the land of lost socks."

I cracked up. Both at his explanation and at imagining him coming up with this scene and placing the socks, one by one - purely to make me laugh. That became a good day and a shared memory that still makes us smile.

How about you? Any stories about a time when your partner made you laugh?

Patient-Focused Grand Rounds

2009-09-09T09:52:00.001-07:00

Leslie of Getting Closer to Myself is hosting the most recent patient blog collection called Patients for a Moment. It's a good read.

And while you're at it - the health care Grand Rounds is up at Suture for a Living.

How Much Should the Well, Caretaking Partner Share with the Ill Partner?

2009-09-07T23:09:00.001-07:00

Here's a question that some comments caused me to ponder:

How much should the well, caretaking partner share with the ill partner?

The ill partner is suffering from body pain, or fevers, or headaches, or cancer, or from the side effects of treatments. He or she has had to give up full engagement with the world and can no longer do his/her old job or hop into a car to visit friends or go to the movies. Spontaneity has been derailed by the medication regimen. Freedom has been shrunk to fit within the boundaries set by the illness. And, as if this weren't enough, the ill partner is, understandably, depressed over his/her symptoms and limitations.

The well partner has assumed more and more of the couple's dealings with the outside world. He/she does the household chores, negotiates with the insurance company, oversees the kids, tries to stay on top of bills & budgets, and goes to work. And, as if this weren't enough, he/she also takes care of the ill partner. He/she helps the ill partner with the daily living activities the ill partner can no longer perform solo. This can include everything from monitoring medication to waking up 4 times a night to help the ill partner get to the commode.

The well partner is physically exhausted and emotionally bone dry. He/she is so busy every moment of the day that he/she can't stop to spare a tear for his/her own sorrow and worry. In those limited moments when there is a brief respite from the storm, he/she starts to feel choked by stress. It is a physical sensation -- as if all the air has been pulled from his/her lungs.

The well partner doesn't know how he/she can go on another minute and at the same time, he/she knows he/she will find the strength somewhere, some how, to continue. He/she doesn't talk to the ill partner about his/her depletion and anxiety because he/she is afraid the ill partner can't bear it -- that it would push the ill partner over some ill-defined edge into full bore breakdown.

This scenario may fit yours, or it may not. Whatever your circumstances are, I'd like to know:

If you are the well, caretaking partner, how much do you share with your ill partner about your situation? What are your choices based on?

If you are the ill partner, how much do you want to be protected from your well partner's state, and how much would you want him/her to share with you? What are your wishes based on?

Well Spouse Caregivers: Do You Ever Say, "Enough!"

2009-08-31T13:28:00.001-07:00

The piece below is one reader's comments to my blog post about back pain. I post it here because I think she not only raises a crucial question about the caregiver's responsibility, but she does so with great awareness, openness, and articulateness. And she is asking for support and advice. So please, if this piece speaks to you, help her out by sharing your experiences and ideas. (btw - she gave me permission to repost her comments here)

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My husband and I have been married 18 years. He was in a car accident 12 years ago that left him with chronic back pain. After several surgeries he was left with a failed fusion. We seemed to muddle through our new life ok for a while. But as of late I see him diminishing so much mentally.

We have two children that he simply does not have the "energy to parent" and my emotional needs were put on the back burner many years ago. I have voiced all of this to him repeatedly over the last three years but nothing seems to have the status that his pain has in his life.

I am 38 and he has basically turned our bedroom into the extent of his accessible world. Recently he went past my limit and I had to ask him to leave. He has been living at another house for over a month. I just feel so empty of patience for him. I feel so uncomfortable about making him get out of his comfort zone. But at what point do you just give up when your partner can not or will not see past their own nose?

He is seeing a counselor and is on antidepressants since he left. He has always suffered from some level of depression but of course it is very severe at this time. He is upset with me that I am calling all the shots.

However when someone withdraws form life like he has, they force you into that position. You become the only one that is able to fill the car up with gas or make appointments or pay bills. Every aspect of life outside the house becomes your area.

I am wondering if between the medication, depression and pain (his counselor tells me that over time chronic pain patients brains can actually atrophy?) that he is just not capable of any husband responsibilities. And if that is the case what do you do with a man that is mobile but completely stagnant?

Is there anyone else out there on my side of the situation that has been married a long while still loves their spouse but is past lonely, past hurt, past frustrated? How are you dealing with it?

Patients For A Moment - A New Blog Carnival

2009-08-26T09:44:00.001-07:00

This carnival is a rotating collection of posts by and about patients. Kim at Emergiblog has put together a great carnival. Have a look.

Relapse & Rebound

2009-08-25T10:21:00.000-07:00

Well...I had to go way up on my meds. This recent pain relapse wasn't going to disappear with each out-breath of meditation or by visioning a river of healing blue water flowing through my body. I haven't been at this level of meds since I first developed my pain syndrome. Even though I feel grateful and lucky that the meds do work for me - I have to say, in all honesty, each step up, each time I spilled one more pill onto the pile, I felt a sense of defeat. I really don't want to be a person who is dependent on pills.

Richard is happy to have me back as a whole person rather than the whipped and broken puddle of a person I am when the pain takes over. He is glad for the gift of medication. I pinball from glad to mad to sad, and eventually let the medication ball drop into the gutter and get on with daily activities.

There is, I admit, a unique joy I feel when the pain recedes but is still close in memory; and the charm of daily routines is not yet faded by complacency and habit. In these moments I can feel delight in the mundane, and I can lean into that "glad to be alive" sense that only comes from having survived something terrible.

So I pour the pills onto my open hand, count each one, notice its size and color, toss them into my mouth, and send them on their journey with a big gulp of water and a sense of gratitude,... and resentment.

Mercy Killings?

2009-08-15T05:12:00.000-07:00

What I would like to know is: have ever thought about suicide as a way out? Have you ever said to yourself, "I want this to end!"

Have you and your partner ever talked about this with each other? Richard and I had a suicide conversation after I had been in constant level 12 pain (on the 1 - 10 scale) for 9 months with no relief in sight and no healers on the horizon. I found it surprisingly comforting to know that I had this option. In fact, just knowing that I could walk through the door to oblivion gave me strength to continue to endure and seek more healers.

Do you think that suicide can ever shift from psychological pathology to reasonable choice?

-------------------------------------------------------------------------------
From an article on the Atlanta News on elderly mercy killings by Marcus Garner:

In a two-week period last month, murder-suicides claimed the lives of two Metro Atlanta couples in their ‘80s.

In both cases, the husband was the caretaker of an ailing wife. And in both cases, the man shot and killed his long-time spouse before turning a gun on himself.

Were these deaths the result of depression, some level of domestic abuse, or were they the actions of a benevolent, merciful spouse?

Edward Travis, 86, executed a carefully-thought-out plan to kill himself and his wife of 60 years, 85-year-old Anne, who suffered from dementia.

George A. Doby, 87, killed himself after fatally shooting his 85-year-old wife, Edna, who suffered from Parkinson’s Disease.

Experts say assisted suicides among elderly couples aren’t that uncommon, and such arranged agreements are becoming more popular in Europe. The Violence and Injury Prevention Program in Tampa Bay, Fla. estimated between 300 and 500 murder-suicide deaths nationally each year of people over the age of 55.

Maggie Beck-Coon, with the Georgia Commission on Family Violence, sees them as one person exerting power over another. “I’m very troubled by the whole language of ‘mercy killings,’ because I don’t think I feel comfortable with someone else determining when you should die,” said Beck-Coon said.

Dr. Patrice Harris, a psychiatrist and director of Fulton County’s Department of Behavioral Health and Developmental Disabilities, cautions not to rush to judgment, however. “Often times, when people are thinking about suicide, they are feeling hopeless and helpless and see no way out of their situation,” Harris said. In particular, Harris said taking care of an ailing spouse late in life can add to the day-to-day stresses many elderly face: losing peers and family to illness and death, retirement, or dealing with one’s own deteriorating health.

Relatives of the Travis and Doby couples pointed to this hopelessness. “He didn’t want to be a burden,” Alan Doby said, speculating the motives of a father he described as proud. Mary Travis cited a letter from Edward Travis in characterizing his as a “mercy” killing: “‘I believe that everyone concerned will get along with me and Anne out of the picture,’” she read from the letter.

New Grand Round for Patients

2009-08-12T06:21:00.001-07:00

It's wonderful to hear the voices of patients telling their own stories and sharing prespectives. Check out Patients for a Moment at Adventures of a Funky Heart.

Advice Columnist Tells Well Partner To Leave

2009-08-06T07:48:00.000-07:00

Advice from a Boston Globe columnist, Meredith Goldstein, about the well partner separating from the ill partner. I would be very interesting in hearing your perspective.

And very interested in hearing from those well partners who did choose to leave -- what was the tipping point for your choice and how ha our life been since the separation?

And I would be interested in hearing from those ill partners - what was your life like after the separation?

HERE'S THE ADVICE COLUMN:

Q: I enjoy reading your columns everyday -- it provides such a welcome distraction at work. I find myself in a difficult, sad situation, and would appreciate any advice you and your readers have to offer.

I have been in a relationship for about four years. My boyfriend and I are very young -- we started dating when we were about 20 -- and we’ve had a great relationship and are very much best friends. We agreed early on there was no need to rush and get married, but we frequently discussed our desire to be together for a very long time. Two years ago we moved in together and it was wonderful; we had a great life, great experiences, great friends.

My boyfriend has always had health problems, but a little over a year ago, things really got bad. There’s no need to go into the details, but suffice it to say, it isn’t going to go away, and it has impacted every aspect of our lives. Because it is often difficult for him to move around, we started going out less and less. Our home became less social as he didn’t like having people over as much. His interests narrowed, his mood soured (he’s being treated for depression). Our sex life dried up. I took it upon myself to do whatever I could to make life better for him; I have taken on more and more responsibilities; I physically take care of him; and I have been patient, accommodating and understanding as our lives changed.

Now I’m at a point where I have accepted that this is not temporary, and I feel increasingly hopeless. I have all of the responsibilities in the relationship, with no help from him; I ask for help when I think it is reasonable, but the general rule is, if I don't do it, it won't get done. What's more is that we basically have no lives. His only real interest now is sitting on the couch watching our favorite TV shows, and it’s the only activity we really do together anymore. I’ve told him on more than one occasion that I miss the things we used to do together and with others, and that despite his pain, I hope we can try to have some fun again, even if it’s limited. He tries sometimes, but even if he manages to get out the door with me, we usually can’t stay out for long before he wants to come home. I’ve tried to broaden his interests beyond the TV even within our apartment (books, board games, video games, anything) but that hasn’t really worked either. His interest in other people has also reached new lows, so socializing beyond the infrequent visits of our few remaining close friends is rare. I have started going out on my own from time to time just to escape the negative and monotonous atmosphere of our home (I always make sure to invite him), but it’s not the same, and since our jobs take up much of our time, it doesn’t feel right to spend a large portion of my limited free time elsewhere. I’ve brought up all of these problems separately on numerous occasions, but I have to be delicate about it because he quickly begins to feel massively guilty and depressed, and sees himself as inadequate.

I feel isolated, stuck, and sad, and have been fighting the urge to flee. I think he may suspect my feelings, because he is reminding me more frequently how he loves me and couldn't go on without me. But I just don't know. On the one hand, I have all the responsibilities of the relationship, and none of the emotional or physical joy that should come with it. I don't think he is either willing or capable of living beyond the lifestyle we currently live. I’m 24 and I am terrified at the prospect that this is it, that this is going to be my life. On the other hand, he’s still my best friend, and I love him and deeply care for him. He’s in pain, both physically and emotionally, and he needs me. If I left, it would break his heart, and when I think about the reality of that, it absolutely shakes me.

What should I do? It’s been over a year, and I feel I have tried everything, and things are not getting any better. Am I a horrible person to be thinking about leaving him?

-- Stuck and Hopeless, Boston

A: S&H, You’re allowed to leave. You’re 24. You didn’t sign up for this. I fear the longer you stay, the worse it will be when you bolt.

He’s your friend. You owe it to him to be honest. Tell him you’re not up for this. You can’t commit to this life, at least not as a romantic partner. You can explain that part of your decision is about age and place in life. I truly believe it’s not just his illness. You want to discover more of the world. You want to get to know yourself better. That's what unmarried people do at your age. You will feel like a jerk -- but being a jerk is better than being a martyr.

Give him the whole picture. Explain that you’ve thought about leaving for a number of reasons, but that his health and depression has kept you around. Tell him you've lost track of how serious the relationship would be if his illness wasn't a factor.

If he can’t get his mind around losing you -- if he begs you to stay (and he probably will) -- assure him that you’ll be there as a friend if he wants you around in that capacity. Remind him of all of the other people in his life who care for him. Tell him to seek out as much support as possible. Dealing with a chronic is miserable. He needs to learn to cope without alienating everyone he loves. If you fear that leaving him will send him into a dangerous depression, talk to his friends and family -- even his doctor. It's their job to get him through this.

There’s no way to avoid feeling like a bad person. It's going to be ugly and there's going to be a lot of guilt and shame. But that's life. You can’t always be the good guy. And frankly, I’m not sure that sticking around would make you the good guy. It would just make you miserable.

Go be 24.

Anthem by Leonard Cohen: Words of Wisdom

2009-07-22T08:12:00.000-07:00

I've been dealing with a nasty relapse of my pain condition so I've been looking for commiseration and inspiration.

I had dinner with friends the other night, and the background music switched to a Leonard Cohen song: Anthem. It is impossible to ignore his coarse, earthy voice, and we all stopped chatting to listen. What we heard in the chorus of this song was a combination of prayer, blessing, mantra, forgiveness, commandment, and lament.

"Forget your perfect offering.
There is a crack in everything;
That's how the light gets in.
Ring ring the bell. Ring the bell."

This Weeks Grand Rounds

2009-07-22T08:10:00.001-07:00

a collection of posts from the health care blogosphere is up at Captain Atopic. It's a good read.

And up at Emergiblog, there's another great Grand Rounds with an emphasis on the nursing community.

Home Alone

2009-07-19T07:32:00.000-07:00

Just as I was entering week two of a kick-in-the gut relapse of my pain condition, Richard needed to travel for a few business meetings. Usually he works at home and conducts business through the vast amalgam of web tools he has harnessed.

So I am hurting, alone. And he is worrying, alone.

But now, we are older and more experienced, and have lived through the darkest days of the pain, and through innumerable bursts of relapses over the past ten years.

Before he left he stocked the refrigerator with apples, and broccoli, and chicken, and Chinese take-out, and even cut up a whole watermelon into chunks. He set up videoconferencing on my laptop (his already had this capability). I made dates with friends to talk to and walk with and have me over for dinner. I upped my meds to dull the sharper edges of the pain.

Richard and I talk and text and tweet each other. It's some comfort. but it's hard on both of us to be hurting and worrying, alone.

How do you manage the daily tasks and find comfort when you and your sweetie are apart?

Caretaker Stress Affects Health of Partner with Heart Failure

2009-07-12T06:05:00.000-07:00

From an article by Nicole Stodard in EmpowerHer

A recent study that appears in the July/August 2009 issue of Heart and Lung affirms in a broad sense what anyone in a committed relationship, particularly a marriage, already knows from experience: one spouse’s mental or physical health ailments can, and often do, tax the other spouse.

This study is particularly concerned with the implications of this dynamic when one spouse has some form of heart failure (HF), a chronic progressive condition that occurs when the heart muscle can’t pump enough blood through the heart to meet the body’s blood and oxygen demand.

The study found that a spouse’s distress had substantially greater impact on the HF patient’s overall health and the course of the patient’s illness than the reverse scenario. Considering the fact that 5.7 million Americans have HF and well over half a million new cases are diagnosed each year, this is concerning.