My mom had Alzheimer’s. And she gave me secondhand Alzheimer’s.
Haven’t heard of secondhand Alzheimer’s? I’m not surprised. I think I coined the term. The way I saw it, either I had some devastating disease as a result of taking care of Mom with her devastating disease, or I was a complete jerk. Since I didn’t want to think of myself as a complete jerk, I decided I had secondhand Alzheimer’s. …
5 symptoms of secondhand Alzheimer’s
Dear doctors,
Are you looking through our charts and wondering what you’ve gotten yourself into? Are you maybe wishing we were someone else’s problem? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. There are a lot of strings attached to us, and there’s a lot of paperwork waiting to join that already insurmountable mountain of paperwork on your desk.
We can’t …
Here’s what we want you to know about being our doctor
“You have no husband?” asked an oncologist at an Ivy League cancer center, his voice full of concern.
“No,” I replied.
“No sons?”
“No.”
“No daughters?”
“No.”
“No sisters or brothers?”
“No.”
“Your parents — are they living?”
“No.”
When I mentioned friends and extended family, he talked right over me. Without a nuclear family, he seemed to think, I had no one.
I’d been diagnosed with stage four gallbladder cancer, usually fatal within months. The surgeon who’d removed three-quarters of …
Patients without partners, and the doctors who stereotype us
Every patient has a story and an experience, and my patient experience began on July 6, 2004.
One month after graduating from high school, I was involved in a near-fatal car accident. My heart shifted across my chest, lungs collapsed, major organs were either lacerated or failed completely, my pelvis was shattered, and I lost 60 percent of my blood. I was airlifted to shock trauma near death and underwent immediate …
A patient’s advice on how to improve the health care experience
Prior to her death, a courageous young woman named Jess Jacobs, who suffered from POTS (postural orthostatic tachycardia syndrome), wrote about the worst health care experience of her life. It is a somewhat horrifying account of hospitalization in Washington D.C. Her goal was to work toward meaningful health care changes in the system for the better.
When I came across the story of another young woman afflicted with this disease, it …
This patient’s story illustrates the barriers to health care
Recently, the widow of Robin Williams made a plea to neurologists.
Susan Schneider Williams’ plea, in the form of an editorial in the journal Neurology, aimed to help neurologists “understand your patients along with their spouses and caregivers a little more” and “add a few more faces behind the why you do what you do.”
Her article tells the story of her husband’s tragic physical and psychological battle culminating in his death …
We are too quick to surrender to the realities of our illnesses
Seven years ago, when I was first diagnosed with Stage 3 breast cancer, I approached it with a determination to win. As a competitive runner, that’s what I’ve always done. Cancer would be another uphill battle, with tough stretches as well as easier ones, just like my races.
My oncologist encouraged me to keep running during all my treatments, telling me it would help on many levels. He and I knew it would …
October should focus more on incurable breast cancer
“Nursing students needed to work in the University Hospital. Good pay. Orientation.”
As a rising nursing school senior in the 1970s, I naïvely applied for the job above without getting the full details. No one mentioned that I’d be working in a psychiatric unit housing twenty-five aggressive, catatonic or schizophrenic patients, many of whom had been locked away for years.
The entrance sign, which should have read “Locked Psych/Med/Surg Unit,” said simply, …
A new nurse gets a crash course in compassion
By the time I reached Dr. R, I was twelve months into an undiagnosed, severe, lower abdominal pain condition. Desperate for an accurate diagnosis and treatment plan after seeing ten doctors who had misdiagnosed me, I was exhausted and beyond frustrated with the care I’d received.
Seated across from Dr. R. in her office with copies of my medical records and symptom diary in tow, I waited quietly while she reviewed …
How empathy can help physician burnout
Whenever he meets with a new patient, Harvey Chochinov likes to ask one important question: “What should I know about you as a person to help me take the best care of you that I can?”
It’s a question every doctor should ask, says Chochinov, author of Dignity Therapy and director of the Manitoba Palliative Care Research Unit; a question he has found helps patient and doctor alike dial …
The value of a spiritually competent doctor
Dr. Kaveh Shojania, a prominent patient safety expert who scoffs at the numbers and laughs at the tragedy inflicted on countless victims of medical error, should step down as editor of a leading hospital safety journal.
About three years ago, a scientist named John James published a study proclaiming that — at minimum — 210,000 people die every year from hospital errors, making it the third leading cause of death in …
Death by hospital: Who’s right?
Until my physical ailments began worsening rapidly in my late 40s, I was a high achiever, proud of my “kick ass” attitude, thinking I was so competent I could surmount any challenge life threw at me. Life appeared to be straightforward, and I didn’t understand why this didn’t seem to be the case for so many other less fortunate folks.
Though I worked hard for my accomplishments and sometimes struggled, there …
The subtle arrogance of good health
“Get well soon!”
That’s a common saying. All of us have heard it. But what if you have an illness that you won’t ever get better from? The most horrible part of having a chronic illness is that it’s forever, or for a very long time.
Unless your personal miracle comes, your illness will always be with you. There isn’t an end in sight. There’s just adjusting to the pain, the tiredness, …
This is my life with chronic illness. Tell me yours.
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I have been a rehabilitation specialist and case manager working with patients who have neurological and neuropsychiatric impairments for thirty years. About three years ago, my life took an unanticipated detour when I was perforated during a baseline colonoscopy. All of my experience as a case manger and patient advocate could not prevent this error or the others that followed.
Although my health, body, and life were forever altered by the …
After a medical error: Here’s what clinicians should do
During the first few days that my mother spent in hospice, I silently sat by her bed watching her chest rise and fall, listening to her moan, counting her doses of Ativan, Tylenol, and Morphine, and tallying the days she’d been without food and water.
On day five of my vigil, I asked her nurse, “How long can Mom live like this? She hasn’t opened her eyes or eaten or had …
At the end of life, searching for the right word
After more than fifteen years of being mostly housebound by chronic illness (which includes chronic pain), here are a few of the dilemmas I’ve faced over and over. I’m confident that I’m not alone in my “should I/shouldn’t I?” world.
Do I accept an invitation from a friend to get together or do I refuse it?
If I refuse the invitation, depending on who issued it, it may be the last one …
The dilemmas faced by the chronically ill
I accompanied my husband to an office visit with his orthopedic surgeon. Jamie had been experiencing setbacks in his recovery from major surgery. I went with him because I understand how hard it can be to distill medical information on the spot, much less remember it. Documenting what the surgeon said would allow us both to reference it later. The more information Jamie had about his condition, the more of …
Don’t secretly record your doctor. Do this instead.
Many of us now have high-deductible health insurance plans, which makes us “cash-pay” patients until we meet our deductibles. According to a Health Affairs health policy brief, high deductible plans are now much more prevalent in both individual and group markets.
The higher the deductible, the lower the monthly premium. If you have a high deductible plan and don’t consume much medical care, you are most likely a cash pay …
How cash-pay patients can beat high-deductible plans
When my friend Madeline turned seventy, she celebrated in a big way: She walked a half-marathon; she hosted a cabaret for family and friends at which she sang and told stories; she traveled to China. Now, six years later, this dynamic woman has become a virtual prisoner in her apartment. She has undergone back surgery, suffered a nearly fatal intestinal infection and, after a fall, had bolts and screws placed …
I live a life in which pain plays a constant role
I grew up thinking an “illness” was either a fever or croup. Illness was a stuffy nose — a sick day, an excuse to miss a day of school. At 18 years old, “illness” took on an entirely different meaning. Illness meant waking up from a coma, learning that my stomach exploded, I had no digestive system, and I was to be stabilized with IV nutrition until surgeons could figure …
PTSD was the illness I couldn’t see
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