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.

Brushing your teeth may prevent disease

It may seem an unusual link, but doctors have found that people who brush their teeth daily are much less likely to develop heart disease than those who don't.

A new study from the BMJ revealed that people who never or only rarely brush their teeth twice a day are up to 70% more likely to develop heart disease.

Although scientists have long suspected a relationship between gum disease and heart problems, this is the first study to high the dangers of poor oral hygiene.

Experts are unsure of the exact reason for the link, but suggest that it may be a result of inflammation in the mouth and gums, which they believe is connected to the build up of clogged arteries.

However despite the findings, the researchers stressed that the overall risk of heart disease from oral hygiene remains relatively low.

In the survey of more than 11,000 people, just 71% said they brushed their teeth twice a day and only 62% said they visited the dentist every six months.

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?