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Monday, April 26, 2010

Tending to Alzheimer’s

by Richard M. Cohen

It makes me want to crawl under the bed and put a pillow over my head. I’m telling you out there in blogland, whoever you are, whatever your circumstances, each of us will be touched by Alzheimer’s – spouses, siblings, friends and neighbors. The disease will show up in our family or across the back fence. You’ve heard the staggering statistics. Brace yourselves.

What I can’t decide is whether it is worse to have the dreaded disease or to take care of a loved one and watch him or her vanish into the ether while lying still in a bed with a beating heart. Many of us take care of each other in good times. That is casual and routine. A slowly disintegrating mind is a different heartbreaking story.

My wife’s brother is only 60, but his early onset Alzheimer’s is turning him into an old man. He’s a good guy and a bright person, interested in the world around him. Now, he has little to say. He stands around, head down, looking at his feet.

I believe that even if an Alzheimer’s patient knows the diagnosis and understands the prognosis, awareness fades fast. A sense of the journey must be lost, the destination missing in the haze. Maybe that is a kindness, an ironic dimension of an unkind illness. I do not know, exactly.

I believe it is the caretakers we must worry about and watch. They often bear the brunt of heartache. They are there to witness close-up and in horror as a loved one slowly leaves. And they bear the scars. Ted Comet is a brave man. His wife survived the Holocaust but will not beat this killer. Ted is a survivor himself, and though he is deeply in love with this woman he is losing, he knows he must stay alive to do his duty.

More to the point, Ted wants to live. He has figured out that helping others keeps him going. He is well into his 80s, rides a bicycle around New York City, and maintains an identity beyond his wife’s keeper.

I admire Ted.

There is so much illness around us, so much bravery. There are no merit badges, no medals for facing down illness, in your own body or that of another. Anyone who is sick or knows illness in another should think twice before feeling sorry for ourselves. Just look around and see what others are going through.

Maybe it is not enough to take care of ourselves. Perhaps we should reach out to relatives, to friends and neighbors to help carry the load. The elderly love to be around children. Everyone knows that. Students search for community service projects. Sometimes they need many hours of service to graduate. Maybe we should steer them to homes, group and private. This would be a gift to the sick and, frankly, to the kids themselves. This kind of program would offer them insight and experience and, maybe, a sense of satisfaction they never have known.

We are in this together.

I wonder how I would handle it if my spouse became ill with Alzheimer’s. Should we feel obligated to keep Alzheimer’s patients at home? Are you afraid you are going to get the disease? If not, why not? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

Posted by: Michelle Howard at 4:29 pm


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Monday, April 19, 2010

Physician, Heal Thyself

by Richard M. Cohen

Physician, heal thyself.” So wrote Aesop, the Greek, suggesting that physical imperfection in a healer is not acceptable. How wrong he was.

We spoke with a Boston doctor dealing with a serious chronic illness and what we have learned is his sickness made him stronger and more sensitive. The doc woke up and started listening to his patients. Hearing them, I should say.

That is my primary complaint. When I am in an examining room, I feel as if I am talking to myself. This doctor with his own health problems will live up to the Hippocratic Oath with a fierce commitment, born of his own suffering. I imagine that is a difficult change to make. It is a mark of humility I do not associate with the medical profession.

Illness changes people, even physicians. What I generally keep to myself is my distrust, even scorn for doctors who believe they are the story when the drama of illness should be center stage. I wonder if doctors have a higher approval rating than members of Congress. But how deep is the average doc’s determination to put the public good first?

Doctors hide behind the limitations imposed by managed care. That is a cop out. They’ve only got a few minutes to learn about your life. Truncated visits with patients do not mean we are only a collection of symptoms and not the whole people we try to be, in spite of our illnesses. The purely clinical approach with little eye contact and scant dialogue about our lives render the narrative of who we really are close to meaningless.

How telling it is that a physician needs to experience serious sickness, to walk in the shoes of suffering souls, to understand what his real job is. Doctors need to look up from test results and evaluations by consulting physicians and take in the whole patient in that hospital bed. Are we out of work and scared? Maybe we are depressed or having family problems. That’s news a doc can use.

Should he or she in the white coat care about all this? Yes. Of course. The quality of connection between doctor and patient is so important. A friend in care needs to look at all the evidence to treat the whole patient. I have to admit I have given up on the doctors in my life. It is not that they are not great mechanics, but their duties should go beyond checking our spark plugs once every year.

Medical students should learn what humanism is from the get-go. Go ahead. Look it up. Medical students should start these discussions while they still remember why they went to medical school in the first place. Get them while their minds are open and they really care. By the time they are interns and residents, they are consumed with their own survival, and it may be too late.

What we don’t need are more Volvo mechanics.

It is no secret that many Americans are unhappy with their doctors but do not want to say it. How many of you are you happy with your doctors? Please open up about what is missing. Describe your chief complaint. If you don’t tell your doc how you feel, how will anything change? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

Posted by: Michelle Howard at 4:28 pm


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Monday, April 12, 2010

Death Came Too Soon

by Richard M. Cohen

Death always arrives too soon. We grow up hearing that death is part of life. Many years can pass before that statement is processed and believed, never mind experienced. Jamie Raab, who I interviewed about becoming a widow too early, saw her husband survive a stroke and succumb to another one a year later. Yes, his death was part of his life. It also was arbitrary and nearly impossible to comprehend.

Jamie spoke candidly about the emotional swings that go with loss. She talked about anger and loneliness and hinted at the self-doubt that lurks behind the scenes. We discussed her new quest for control, probably from losing it to a condition she could not change. We laughed about her penchant for hiding behind the broom and dust mop. Jamie cleans her apartment with a vengeance these days.

Emotions also run strong with any serious sickness that diminishes a person and fractures the quality of a life. Progressive diseases progress, demanding countless compromises. The Faustian bargain that never will be accepted is this: I will live with what I have right now, the offer goes, just don’t make it worse. Of course that offer is routinely rejected, without appeal.

I, for one, feel that a little piece of me dies each time my condition worsens, chipped away cruelly as the MS takes another step.

This is not a contest, and there is no hierarchy of suffering. I would not be so misguided as to compare my ordeal with Jamie’s. That is not the point anyway. Loss assumes many forms. It may assume tragic proportions for us because whatever disease is attacking our bodies, that’s what we live with.

When others we know have it worse than we do, that becomes a valuable frame of reference for judging our own problems. It does not lessen our own pain. When I sit wide awake in the middle of the night, I do not dwell on the plight of other people. More likely, I am thinking about the challenges of tomorrow and wondering how I will make it through another day.

There is so much pain out there. I feel for us all. Long ago, I decided that I want to live my life with grace and dignity, keeping any bitterness to a minimum and to myself. I will not pretend I do not hurt. The mythical red cape and “S” on my chest are a fiction, except maybe on my pajamas. But I feel better about myself doing it right.

I suspect Jamie feels the same way.

Even the strongest among us dissolve at the loss of a spouse. We think part of our life has ended, too. I wonder if we ever recover from the death of the one we love. Do there have to be years of misery? Are there any shortcuts in the mourning process? Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

Posted by: Michelle Howard at 4:27 pm


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Monday, April 5, 2010

Diabetes War

by Richard M. Cohen

Yes, Diabetes is genetic. Type 1, or childhood diabetes, as it has been called, is a function of your genes. It is not your fault that you have it, a conclusion reached by many when Type 2 Diabetes runs rampant. Type 1 presents itself arbitrarily, except for unseen branches on your family tree.

Type 2 is the story in the U.S. today. It, too, is genetic but can be headed off or controlled with a healthy diet and regular exercise. Americans are living with record levels of obesity. Massively overweight individuals become a magnet for the disease, and Type 2 rates are exploding to epidemic proportions. The condition is seen in surprisingly young kids.

Type 2 becomes a lifestyle disease because a healthy diet and regular exercise can keep it under control. The American penchant for overeating and high fat, fast food diets are fueling the fire. Look at Father Andrew, who I’ll interview later with his doctor.

The medical community is doing a dance because they do not want to peddle guilt and there is a profile of those who frequently get Type 2. Patients often are lower income, less-educated people, often minorities. Doctors, quite adroitly, hesitate to foist guilt on them. They want to draw these folks in and are afraid of pushing them away. It is not effective medicine to point fingers and assign guilt. This is where medical political correctness comes into play.

This strikes me as a high wire act. Fatty meals and junk foods are the culprits – staples for poorer people. Sitting on the couch without any exercise, even just walking, exacerbates the insidious effects of crap in your system. Maybe after the bad diagnosis appears on our doorstep, we wake up and change our ways. Maybe not.

What about our kids? McDonald’s, Coca-Cola and Campbell’s Soup, announced that their child-oriented advertising will do more to promote health foods and exercise. Right. They still are peddling the poison. These companies, which account for two-thirds of child-targeted food and drink commercials on TV, agreed to cut back the use of characters such as Shrek and the Little Mermaid to pitch unhealthy foods.

Let’s see how long that lasts. McDonald’s tried this once before, but customers just continued to go for fatty Big Macs. These companies respond to political pressure and a perceived public demand to demonstrate corporate responsibility. Then people stop buying healthy because the high-fat, sugar-soaked products are more appealing. If they build it and people do not come, we are back to where we started.

There is a push from the federal government and in some local quarters to keep crap out of our schools and get kids to learn to go healthy at snack and meal time. Of course it comes down to corporate profits. Getting companies to dump this stuff out of vending machines at schools is no easy task. In the end, it comes down equally to personal responsibility.

The doctors cannot do it all. We must be proactive. I believe we need to take more responsibility for how we lead our lives. This is not brain surgery. Why do people find it so difficult to adjust their lifestyles, regulate diet and exercise? It makes life better. Add your comments to this Discussion in the Chronic Disease & Disability Exchange.

Posted by: Michelle Howard at 4:26 pm


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