I’m not a complainer or worrier-at least not often or for long. Comparatively, I have little to complain or worry about. Yet, this week I struggle with pneumonia, try to regain strength, not hurt myself coughing and not being a jerk or a burden. I’m also turning 65 and enrolling in Medicare. I keep dwelling on the amount of effort it takes to be or support someone who is sick. What is that effort? I’ve come up with six questions anyone who is worrying asks themselves. You’ll see in the pie chart below that I’ve arbitrarily assigned a percentage to how much I think most people worry about each question. (No science here, no evidence, just my thoughts)
- 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!
The pervasive drumbeat of Calls for Action in healthcare overwhelms me, excite me, bewilder me. I’m wired for action. I have to listen and consider or shut it out. I have no middle ground. There’s a limited amount of gas in my tank. I feel protective of my retirement dollars. And I still need to take out the garbage and do the laundry. Do I want to respond? Am I able to respond? What am I really responding to? How much is enough? Does it align with my mission? Will it be fun? 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 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
More about person-centered #CarePlanning. (If you missed my first post go here)
Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.
In its simplest form communication is who, what and how. Who needs to communicate? What do they need to communicate? How will they communicate?
#CarePlanning focuses on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?
Let’s engage to better understand #CarePlanning from the point-of-view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when? Let’s also narrow our focus to #CarePlanning that can be to communicated during transitions between settings rather than within settings (For example, between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). Next, let’s look at #CarePlanning during illness rather than wellness or prevention. Edward Suchman (1965) devised an approach for studying illness behavior with five key stages of illness experience: (1) symptom experience; (2) assumption of the sick role; (3) medical care/healthcare contact; (4) dependent patient role; and (5) recovery and rehabilitation. (my italics added). Finally, let’s be sure to include the social determinants of health or as us non-academics call it, life. More
Advocate, Caregiver, Family man, Leader, Musician, Nurse, Patient Advocates, Best health, caregivers, end-of-life, ePatient, goals, health partners, health team, leadership, MS, multiple sclerosis, relationships, superpower 4
I’m thankful that I was born a white straight male to a closeted gay dad, Ruben, and a Holocaust survivor, Ruth – I appreciate that I have first world problems and learned from them that I must act to better the world.
I’m thankful that my best friend is my life partner and care partner – I strive to be equal to her love.
I’m thankful for my extended family, characters all.
I’m thankful for a 40+ year career as a nurse – privileged to serving during people’s most vulnerable moments.
I’m thankful that I was invited to join my grandmother, mother, and son during their end-of-life journeys.
I’m thankful that my grown sons love the strong women they married, revel in fatherhood, and contribute to community well-being – they keep me honest.
I’m thankful for my grandsons – OMG, what can I say?! More
Three weeks ago I wrote about navigating our experiment of one. This navigation is health planning over a lifetime. Health Planning over a Lifetime includes having destinations or goals and deciding what needs to happen to get there. Who’s going to do what, by when? How will we recognize when we’ve arrived. It helps to anticipate risks and barriers (those unexpected forks in the road), and have a plan to prevent or manage those unexpected forks. We’ll want to track and share progress. We need a table to sit down and process what we’ve learned, so we can change course when necessary. The health and wellness industry hasn’t provided us with the setting, the skills, or the technology for this vital health planning over lifetimes. It’s nowhere. More