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. Continue reading “Need a recharge? Listen for what works.”
“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. Continue reading “Belonging”
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. Continue reading “Personal Health Goals”
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. Continue reading “Person-Centered #CarePlanning – What Data?”
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?! Continue reading “Giving Thanks”
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. Continue reading “Health Planning Over a Lifetime”
I was discharged after bypass surgery with 26 pages of instructions. I was just concerned about getting home.
My dad lives alone on the other coast. He takes 11 medications from 4 different providers. At least one gives him a blood thinner. What do I do if he bleeds?
I can get my acupuncturist and massage therapist to talk to each other, but not my doctor. They’re all helping me with my neuropathy pain.
My doctor tells me that if I get this surgery I’ll have a 10% chance of living longer and 1% chance of serious complications. What does that mean for me?
The doctor told my mom that she can’t drive anymore. How will she get her groceries, her meds, to her doctor appointments?
Who will feed my cat if I have to go to the hospital?
I live 4 miles up a dirt road. Will I be able to stay in my house?
It’s complicated to manage health and wellness. Planning and living care is daunting. The journey occurs inside and outside of the medical space. Sometimes we travel alone and sometimes with our care partners and health team. Always within our communities. The journey is our life – one foot in front of the other, with expected and unexpected, desired and undesired forks in the road. We can wing it or look for a map. We have evidence of what works – sort of and sometimes. The evidence is about specific routes for groups of people. You and I may be on an unusual route. You and I are not groups of people, we are one person in many groups. Once a person decides or needs to feel better, a roadmap helps. A roadmap plus stopping periodically to check if you’re still heading to your destination. Continue reading “An Experiment of One”
My mom insisted on end-of-life care at home. At the same time she worried about being a burden to her family. A few weeks before she died, when she once more lamented being a burden, I said, Mom you are a burden, get over it. We did. Thankfully, she laughed and accept it.
Her husband wanted to die at home, but she couldn’t handle being a caregiver and put him in a nursing home. Fortunately, we could afford nursing home care for my step-dad and we could afford 24/7 care for my mom at home for her last month with family rotating in from the other coast. It was still exhausting for everyone. When my wife and I discuss end-of-life and I filled out paperwork about my wishes, I emphasize care at home. Now I realize that is selfish. I don’t want to burn my family out. The same burden my mother worried about. If they need to put me in a nursing home, I’ll deal with that. Continue reading “Pocket Therapy for #Caregivers”
I officiated at my 26th wedding yesterday – a young lady I’ve known since she was born. So honored to be asked. Now I’m in DC to meet the few week-old son of a couple who’s wedding I performed several years ago. After the 10th marriage I’ve done, I say to every couple, there’s a minute before which you aren’t married and the next minute you are. What’s the difference? Five of the first ten are still married. All of the rest are still married. Correlation? Who knows?
Life is a series of thresholds. The minute before and the minute after. We transform during thresholds. I relish participating as a minister, a nurse, or as a human in transforming thresholds. Thresholds are intimate and beautiful. It’s love. So whether it’s a wedding, at the clinic’s registration desk, hearing good or bad news, or simply witnessing a life moment, how we engage people over thresholds profoundly affects the experience for us and for them. Be present, appreciate, wonder, make a difference. Thanks.
In our 30’s we lived in West Virginia – very rural, back-to-the-land hippies, eight miles up a dirt road. We participated in many communities. Our intentional community of families shared 180 acres of land, helped each other build our houses, raised our kids together, home schooled, with some facsimile of farming – garden, bees, fruit trees, chickens. Another community was the town emergency squad where I volunteered as a paramedic and my wife drove the ambulance. The community of young back-to-the-landers throughout the state was yet another community – playing music, partying, sharing skills, stories and resources. A different community was that of a state-wide network of people teaching Advanced Cardiac Life Support – meeting twice a year to train trainers and then traveling to teach at each other’s courses. Another, was the group of people lobbying for homeschooling in the state capital – conservative Christians alongside hippies. Although it’s the most rural I’ve ever lived, I grew up in Chicago and Detroit, I had the highest sense of community there in rural WV.