mindfulness | Danny van Leeuwen Health Hats - Part 3

Mistakes – Finding your Groove Again

By | Clinician, ePatient, Family man, Musician | No Comments
We make lots of mistakes improvising while playing music in my jazz combo – wrong notes, lose our place, no feel for the rhythm. No mistakes never happens. The music is good when the group communicates, recovers and finds the groove again. There is never no mistakes on the health journey.  Mistakes range from missed doses, added pounds, underwhelming exercise, and falls to unhappiness, crabbiness, and misjudged  function. Something hopeful doesn’t work, something makes you sicker.  It’s the human condition – mistakes. Expecting no mistakes is unreasonable. (I’m not talking about never events – wrong sided surgery, neglect, hubris, disrespect). Health can improve when mistakes are recognized and communicated. Lessons can be learned, something else tried.  We find the groove again.

Labels – DisLabels

By | Advocate, Caregiver, Consumer, ePatient | 3 Comments
I’m disabled.  Iidentifyashaving a disability.  Someone else says I’m disabled. Do Ihave a disability? I’m a family caregiver of someone with a disability. Do I have lived experience? What does all this mean? This week I found myself in several conversations about disability. One was with a person newly diagnosed with a chronic condition facing a significant impact on his life who feared he was now disabled. Another conversation was about what constituted lived experience – frequent hospitalizations, a family caregiver, a person in recovery, a person with a physical disability who remains highly functioning, someone dependent on others for many activities of daily living? The population is aging. The longer one lives the more likely they are tohave a disability. Sometimes two people have the same challenges in function – one identifies as disabled, the other doesn’t. One town considers only limitations in locomotion as a disability, others include other challenges.

Last days – a bittersweet journey

By | Caregiver, Clinician, ePatient, Family man | 11 Comments

She’s walking on a people mover. You know, the moving sidewalk in an airport. My mom finds herself going from blue to the sunlight. A few days ago she was alone, yesterday she saw her Opa, her father, and a beloved minister, who died decades ago, on the people mover. Wonder when or if she’ll see her husbands. She says she’s been forgiven for her worst transgression. Thank you, Lord. Today she speaks about furling. Furling?! Like a flag, I ask? Yes. Who will I be given to after I’m furled. She doesn’t want me to hurt. From you dying, I ask?  No, that’s life. You can handle life.  Then she drifts off. Her phrases have gaps of 30-90 seconds. She usually picks up where she left off. This takes listening to a new dimension. She doesn’t ask. how will I know that I’ve died? anymore. Her eyes are always closed. She’s gaunt. Her brow is smooth. Breathing regular. I’ve known this woman all my life. Oh, ma.

Tension between rights and safety

By | Caregiver, Clinician, ePatient, Family man | No Comments
My mom is failing – pancreatic cancer. I’m struggling with the balance between her desires and her safety.  I firmly believe in Empowered, Equipped, Engaged, Enabled individuals on the health journey: e-patients as described by the Society for Participatory Medicine.  I also believe in Using Power Honestly, Wisely, and Respectfully as written in the Advocates Way of Advocates, Inc.
So when my mom says she doesn’t need help, yet I see that she’s unsteady, has had several near misses – almost falling, wants to stay in her home, and has varying degrees of self-awareness, mental abilities, I’m concerned about her safety and ability to make a safe decision. Thankfully, we avoided disaster, after coordinating with several people to be with her and offer the same feedback: You need 24/7 help. In a period of clarity she agreed and now feels relieved.
This tension between rights, dignity, and safety repeats itself everywhere. I experienced it as a parent, as a nurse, as a patient myself, and as a caregiver. I didn’t let my grandson run across the street, rather holding his hand and instructed him in good crossing habits. For ourselves and those with whom we share the health journey, we can acknowledge the tension with mindfulness and respect and get help maintaining that balance.

Fear on the Health Journey

By | Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist | No Comments
Fear – an unwelcome, yet familiar, occasional companion on the health journey. A sinking feeling in the pit of your stomach. Your mind racing, reliving dreaded possibilities. Anxious panting with dreams of careening out of control. What helps? A certain companion, prayer, a drug, meditation, comedy, music, time. When I’m afraid, my family’s reassurance, a loving, lingering embrace, belly laughs, imagining my son, Mike, his arm around me, sitting with our feet dangling on the bridge to our WV home, listening to the creek rush below. The human condition contains fear – it’s inevitable. Knowing what works and what doesn’t when scared is more likely needed than your blood type or diagnoses. Why doesn’t the health team routinely keep track of this? It should be on a card in your wallet.


By | Caregiver, Clinician, ePatient, Family man, Leader | No Comments
I’m on vacation visiting a friend who I first met when I was 8 years old. We’ve been close friends ever since.  His wife asked me how I became a nurse. Well, I was 19 looking for a job and had a choice between reading water meters and becoming a psychiatric nurses’ aide. Reading water meters paid more,  but I would have had to cut my shoulder length hair. I chose to become a psychiatric nurses aide. The Director of Nurses guided me to nursing school. My old friend’s mom, counseled me to become a doctor. “No” I said, “I’d rather take care of people.” My friend’s mom was a social worker, she valued taking care of people.
So I’ve been a nurse for 40 years – a rich and wonderful profession. I’ve had a meaningful and never-dull career working in home care, physical rehabilitation, emergency, acute,and intensive care, consulting, quality improvement, managed care, and informatics.
Here’s to vacations! We all need a break – patients, caregivers, nurses, and leaders. Give us all a break. Please!

Caregivers Have Other Lives Too

By | Advocate, Caregiver, ePatient, Family man, Leader | No Comments
I’m amazed at what people are capable of. This week I met a nurse leader who manages a neonatal intensive care and transport unit while mothering 5 children (one of her own, 3 adopted and one foster) – I spilled into amazement when she couldn’t meet with me at a particular time because she had Rotary obligations. I was on an airplane and met someone who cared for her ailing, rapidly dying husband, was the sole family earner, with only spotty help from family. She was on her way to a short-term paying gig. I hear stories like this when I meet caregivers.  Caregivers have other lives too. Are all these people saints? They would all say, what else would I do? It’s done for love, sense of obligation, inertia, no choice, who knows. Still, 93 million caregivers in the US. As Don Berwick, candidate for governor of Massachusetts said to me recently, it’s by far the largest health care workforce in the country. Do you know the caregivers in your midst? They’re everywhere. It’s like walking with a cane-suddenly you see all the people with canes.
I’m reading a book, The 7 Habits of Highly Effective People by Stephen R. Covey. Some highly effective people are caregivers.  Some caregivers are highly effective people. Covey talks about delegation. Effective people delegate.  Effective caregivers delegate. Many people have a few minutes to help the helpers. Effective caregivers know how to delegate: shopping, laundry, errands, sitting, accompanying, cooking, cleaning, on and on. Really, though, most caregivers are stuck with caregiving. With no societal support, no help, no relief. If 1% of caregivers, 930,000 people, couldn’t caregive, Medicare and Medicaid would go broke. (At a conservative estimate of $5,000 per year in additional cost, that’s $4.65 BILLION per year). You policy wonks: what do we do now?  This number will only increase.

Oatmeal for Break

By | Consumer, ePatient, Family man | 2 Comments
Today, I’m a bit overwhelmed with my self-committed obligations: write a blog, finish the family birthday calendar, print the Xmas cards, be a good member of my in-person and virtual teams (professional, community, family), take my medicine, play music, exercise, eat well, rest enough… OMG. Why do I do this? Am I nuts? What would I do instead?  It’s all so fun, except when it isn’t. What would I be if I didn’t do all this stuff? A shell, a zombie, a wraith? The zen of balance. Mostly I feel balanced. My barometer at work is: feel like I can manage 3 days a week and wonder if I can manage 2 days a week.  If it’s the other way around it’s too crazy. If I can handle it more than 3 days a week I’m not pushing the envelope enough.  So, it’s oatmeal for breakfast.  Thank God I love oatmeal. Have a good week!

Giving Thanks

By | Advocate, Caregiver, Consumer, ePatient, Family man | One Comment
My super power is accepting what is. Doesn’t mean I settle for what is. After all I’m a catalyst for change. Accepting and appreciating what is makes for a solid foundation and a realistic start. I can’t get from here to there if I don’t know – and value – where here is. I give thanks for my super power. I didn’t do anything to get this super power. No degree for it, no lightening strike – I was born with it – lucky genes and family history, felt safe growing up. I give thanks for (value) clean drinkable tap water, regular garbage pick-up, laden grocery shelves, the sun shining as often as it does. I give thanks for my sons, their wives, my grandkids, my extended family, my home life, my inspiring co-workers, my health and especially, my honey. I give thanks for the health problems our system has – I don’t live in a refugee camp outside Syria.

I give thanks, for you, my loyal readers.  I look forward to this virtual community every week that welcomes my musing on the magic levers of best health. Happy Thanksgiving!

My New Job

By | Advocate, Leader | 4 Comments
I’ve received many notes asking about my new job as VP of Quality Management at Advocates, Inc.  Advocates’ services are designed to meet the unique needs of elders, families and individuals with mental health challenges, addiction, developmental/intellectual disabilities, autism, brain injury and other life challenges. Advocate employs over 1100 staff members and serves 20,000 individuals at over 100 sites across Eastern and Central Massachusetts. The services include Residential Supports, Outpatient Mental Health and Addiction, Psychiatric Emergency Services, Home-Based Services for Children and Families, Community Justice, Advocacy, Benefits and Legal Services, Family Supports, Employment and Vocational Services, and Day Habilitation. At the heart of all Advocates services is a commitment to partnering with the individuals we support and, where appropriate, their family members, so that they can lead full and satisfying lives of their own design. We practice a person-centered approach that respects the unique needs, wishes and abilities of each individual. Read More