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relationships | Danny van Leeuwen Health Hats - Part 3

Giving Thanks

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader, Musician | 4 Comments

I’m thankful for the superpower that I shared with my mother, Ruth, and son, Mike – accepting what is.

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?! Read More

Health Planning Over a Lifetime

By | Advocate, Caregiver, ePatient, Informaticist, Leader | No Comments

appalachian-trail-chrisbianchinj-by-michelepapaleoThree 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. Read More

An Experiment of One

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader, Researcher | No Comments

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. Read More

Pocket Therapy for #Caregivers

By | Advocate, Caregiver, ePatient, Family man | 4 Comments

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.

Elderly woman

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.  Read More

The Minute Before and the Minute After

By | Family man | No Comments

 

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 whose 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.

Nowhere We Can’t Get to in an Hour

By | Advocate, Family man | One Comment

In our BvL WV30’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.

House WV Read More

Cuz I’m the Dad! That’s Why

By | Advocate, ePatient, Leader | One Comment

scoldingI wish my partner would carry his load. How do I get my kid to clean his room? She never cooks! How do I get her to talk to me? People in relationships complain and scold – expecting the other person to change and do whatever. Makes me cranky. Relationships are a two-way street in a setting with values, habits, and pressures. My kids once gave me a button for my hat: Cuz I’m the Dad. That’s Why! I have been resoundingly unsuccessful over 60+ years getting someone else to change at pretty much anything. Read More

The Thorny Thicket of Feedback and Advice

By | Clinician, ePatient, Leader | One Comment

When I was diagnosed with MS, people came out of the woodwork with advice and feedback. I was so not receptive. When I talked with my neurologist about the advice, he said, everything works for someone. The challenge is figuring out if it works for you. I have an executive coach who gives me feedback periodically. This I listen to and follow to the best of my ability. My wife gives me feedback. After 41 years of marriage I know she’s right 95% of the time. I follow it 80% of the time. A family member asks me for advice and I’m reluctant to give it. Who am I to advise? What if it’s bad advice? Giving and taking advice or feedback seems so complex, fraught, welcome, and unwelcome.

What’s the difference between advice and feedback? According to the dictionary,

Advice is guidance or recommendations concerning future action, typically by someone regarded as knowledgeable or authoritative.

Feedback is information about reactions to a product, person’s performance of a task, etc., used as a basis of improvement.

They blend together for me.

Speaking with two teachers, math and art, we came up with empathy, modeling, and faith as the keys to giving great feedback and advice. Empathy. Listening to understand the person’s story, feelings, and perceptions. Modeling. Walk the talk. Faith. Confidence that the person is already great and can act on the feedback or advice you’re giving if it’s right for them.

So what about key factors for receiving feedback and advise? How about trust, readiness, and self-confidence? Trust. The adviser, feedbacker(?) is knowledgeable and has no other agenda than your growth or recovery. Readiness. I’m open. I want feedback. Self-confidence. I can do as suggested. Read More

Alone

By | Advocate, Caregiver, ePatient, Family man | No Comments

I first thought about care partners 20 some years ago when my oldest son invited me to spend a few hours with his team heading to Zimbabwe for development aid work. “Talk to us about health, Pop.  What do we need to know?” I remember telling them “keep it zipped up” and “buddy up with a health partner. The health partner commits to sticking with you if you get sick, come hell or high water. Let’s buddy up now”   Six months later, my wife and I received a letter (before email) from Zimbabwe after we hadn’t heard from our son in 2 months. She wrote, “I am your son’s health partner.  He’s OK. He got malaria and just got out of the hospital. I wanted to let you know”

Today, as I advocate for care partners, I wonder,  “What if my son hadn’t had a health partner?” What happens to all these people who don’t have care partners? They are alone.

Ecclesiastes 4:10 – For if they fall, the one will lift up his fellow; but woe to him who is alone when he falls, and doesn’t have another to lift him up.

This week, Keren Landin, a scientist at Tuft’s, opened my eyes to social networks. Read this book, Connected, by her mentor or watch this YouTube TED Talk. The good news: almost everyone is connected to someone.  Key words: almost and someone. To me that means there are still those with no one and sometimes someone doesn’t include a caregiver or care partner. Read More

Travel Companion

Guests on People’s Health Journeys

By | Advocate, Caregiver, Clinician, ePatient, Family man, Leader | One Comment

As I learn more about and am sought out more as an expert in patient engagement, empowerment, and activation, I struggle to respond to the health-system centric definitions given by people thinking they are patient-centric or want to become patient centric. Stuff like, ‘How do we make patients feel like they were included in decision-making.  I say, “wait a minute, think of it as if you were the guest in patients’ health care journeys.”

I first thought about being the guest in someone’s health care journey 25 years ago when I worked with my sister-in-law, Peggy Boland, a staff nurse in an Intensive Care Unit in Cobleskill, NY. She inspired and taught me much. She would knock on the doorway and ask if she could come in, even if the patient was unconscious. She’s say, “I’m going to turn you now. Ok with you?” She’d greet every person who came into a space she was in. She respected thresholds and personal space.  A very busy person, caring for many people, she’d ask, “Is there anything I can do for you?” and do it or say, “I’ll be back in x minutes and do that.” She always made it her business to know family members and find out who would be the care partner in the ICU and at home. She included them in all activities, teaching how to help move, feed, and toilet the patient. “It’s good for you to know this, it’ll be easier than this when you get home, but harder than before you came in. Any questions?” She was proactively curious and helpful. She explained and taught all the time. At the beginning of each shift Peggy would meet with the patient and care partner, “Here’s what I have on my list to accomplish today. What’s on your list?” Then, “Ok, let’s do this, at that time.” Collaborative care planning. Read More