We celebrated a 100th birthday around my Aunt Kikke, born during WWI in the Netherlands. She interrupted medical school and then emigrated to the US when the Nazi’s invaded. She couldn’t get into medical school here because she was a refugee, a woman, and a Jew. She was finally accepted to Johns Hopkins Medical School on Albert Einstein’s recommendation. Yes, that Albert Einstein. Aunt Kikke, Kato van Leeuwen, practiced as a psychoanalyst through her 90’s. The US has thrived throughout its history from the inspirational careers of refugees and immigrants such as my Aunt.
- Family man
Who knew he loved penny whistles? The pianist who accompanied his cello-playing friend on piano for years told a story yesterday at his funeral. At Christmas last year, this father who I knew as awkward, serious, unemotional, religious, conservative, classical music-loving, got the church choir penny whistles and led them in a performance of Good King Wenceslaus. While the story was told, the priest pulled a penny whistle out from the pulpit and tweeted a few notes. “It’s there to keep me humble.”
I consider myself a good read of people. 50-75% of the time I’m spot on (That’s 25-50% spot off). It leads me to an occasional empathy-challenged state. A penny whistle can tip the balance.
Happy Father’s Day all you fathers. I love the father in my sons. Here’s to you, Cliff, a faithful reader of this blog. You’ll be missed!
Pissed off only begins to describe my reaction to the passage of WealthCare, TrumpCare, RyanCare. How about outraged, furious, despondent, bewildered. My frame has always been: Everyone has a right to basic health care. How can we align the forces of this great and diverse country for best health for all? More
I’m not following March Madness this year for the first time since we bought a TV in 1985. We ended cable this year (that’s another health story for later). Rather, I followed the suspense of the failed enactment of RyanCare and TrumpCare. I silently cheered at my seat in DC while reviewing PCORI Palliative Care funding requests. My elation lasted all of five seconds. I can’t ignore that Ryan, Trump et al still want to end funding for Meals on Wheels, housing subsidies, and home energy supports. We know that even with the best-subsidized insurance, a person who can’t get enough food to eat nor heat their home, nor afford a home can’t benefit from great medical care. These social determinants of health (or living life if you’re not a researcher or policy maker) impact health as much as, if not more than, medical care. More
I feel awash with stories (nightmares even) of disastrous, frustrating relationships between people and their professional care teams. I listen with amazement and watch the hurt, the anger, the self-blame, bubble out, spew forth. Sometimes I have to sit sideways to protect my heart from breaking. At their best, relationships are partnerships. Partnerships can be a bitch in the best of circumstances. Yet, good partnerships make me high – the partnerships with my honey, my work teams, in music groups, with the anonymous one-time chance encounter and yes, with my health teams. More
I’m preparing to attend a California Compassionate Care Coalition palliative care conference #cccc17 in a week. I’m reminded of the power of community in advancing good health practices. I have two stories. The first is about the ongoing public health collaboration since 1993 in LaCrosse, WI to meet and sustain very high rates of advanced care planning and following documented preferences through end of life. A group of people organized a region-wide initiative to elicit, understand, document, and honor a patient’s preferences about future medical care. As a result end of life preferences are a regular part of community conversation, documents became easier to understand and use, some electronic medical records facilitated access to choices, and following the choices became standard practice. In 2010 90% has a plan, 99% were available in the medical record, and 99.5% of the time treatment was consistent with preferences. (See the Journal of American Geriatrics Society). Amazing! More
Harried caregiver: What are we supposed to do next? Instructions from doctors, just getting through the day, plus dealing with bureaucracy? My word, I’m so overwhelmed. Everybody thinks their thing is the most important. Can’t this be easier for my wife and me?
Recently diagnosed patient: I feel like crap. I want to follow instructions, I do. I thought I understood everything at the office. Now I’m home, how do I get my questions answered? More
“I rest in ease, knowing there are others out there, whispering themselves to sleep, just like me.” ― Charlotte Eriksson
I am the son of Holocaust survivors. My mother was a German Jew, a refugee in Netherlands spending her teen years in hiding, then a refugee in the United States. Her family had means and connections. My father’s father was a survivor of the Bergen-Belsen concentration camp and a refugee in Switzerland, then the United States. He had means and connections. They were both welcomed into this country. More
Advocate, Caregiver, Consumer, Family man, Nurse, Patient, Uncategorized adherence, Best health, care planning, caregivers, engagement, Exercise, goals, habits, health partners, health team, learning, mindfulness, relationships, Rest 1
As a person with MS, I’ve written that my personal health goals are to progress as slowly as possible and do nothing that will mess with my pathological optimism. People I talk with about personal health goals say it’s not easy to come up with personal goals. What do I mean? OK, people who are well want to stay well. Those who are acutely ill (cold, broken leg, stomach ache, etc.) want to get over it. Those who have chronic conditions want to manage as best as possible. Here’s a stab at a list of personal health goals. More
Sadness and fatigue are kissing cousins.
So are chronic illness and fatigue.
Close your eyes, give in to fatigue.
When fatigued, turn off the news.
Passion finds and expands the cracks in fatigue.
Bone-tired fatigue? Take 2 deep breaths. Move something, anything.
Belly laughs exhaust fatigue.
Trump fatigue. #IamAMuslim.
A lethal stew: worry, annoyance, bitterness, and fatigue.
Fatigued? Love yourself. Whatever you do today is enough.
Fatigue loves hugs.