Family man


By Caregiver, Consumer, ePatient, Family man One Comment

Limits. Spending time this weekend with friends of 30-40-50 years – lots of young kids my grandsons’ ages in the mix. Watching the constant shifting dance of setting limits, testing limits. Children cutting their teeth on their parents and grandparents. Also observing us 60 something oldsters bumping up against our physical capabilities – joint disease, surgery, acute and chronic illness. How long can we keep up the pace we’re accustomed to, how long do we want to? How do we maintain or extend our capabilities? I watch my 87-year-old mother, in pretty good health, slowly winding down, withdrawing from some social and physical activities. Limits – acculturation, recalibration, will. Limits impact community engagement, social connectedness – Physical access, relationships, conduct, opportunity. We respond so differently to limits – tantrums, frustration, anxiety, negotiation, determination, resignation, relief. A magic lever of best health: our response to limits.

Worry, a familiar & unwelcome companion

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Leader No Comments

Worry, a familiar and unwelcome companion on the health journey. What do I have? Will I have to adjust my life (further)? Can I keep the faith? Who will help ME? What have I missed? Can I do it all? Fretting weakens- stomach aches, binge eating, inattention, sleeplessness, short fuse-what a pain! Who, on the health team – person at the center, caregiver, professional – who that is alive avoids worry? It can fill the spaces between the cells. Worrying makes me mad. It saps fuel from my limited tank. What helps me lessen worry? More information, empathy, kvetching for a minute (a timed minute), getting out of bed, making a list, grandkids, music, meditating on my peaceful place, following a mentor/counselor’s instructions, change something in my life, rarely, a pill. How can I help lessen the sum total of worry in my teams and networks? I can recognize the signs, provide information, be flexible, listen, empathize, and offer small unexpected kindnesses. These are magic levers of best health.

Driving your own health journey

By Advocate, Caregiver, Consumer, ePatient, Family man One Comment
How is it that people develop and learn to drive their own life, their own health care journey? Our 5-year old grandson usually gets picked up from school on Thursdays by my wife – a highlight of his week. We were on vacation. The email notification from his dad to the school of the change in schedule was never received.  My grandson noted the expected change, rearranged his after school routine with his teachers.  Presence, confidence, comfort, acceptance. Environment, self-confidence nurtured. Driving his own life. Some don’t have my grandson’s fortune.  They have tenacious, dogged, self-preservation – I’m driving my own life, dammit! Some have one of these characteristics, but are unfamiliar with American culture and language or American health care culture or language. They may find themselves in dire straits.  They benefit from guides with a road map and interpretation. But can the desire to drive your own journey be created with classes and tools?  Probably not. Plenty of need and opportunity for guides, classes, and tools for those whose fires are banked and need stoking.

Technology is the cutlery and the dessert

By Advocate, Caregiver, Clinician, Consumer, ePatient, Family man, Informaticist One Comment
I’m preparing a presentation about Caregivers and Health Information Technology to be delivered in a month at the HIMSS14 conference in Orlando with MaryAnne Sterling. So many challenges as caregivers, as persons in the center of care, as health professionals, as administrators, and as developers. First, there are different levels of caregiving. There’s the caregiving of life partnerships: partners, spouses, parents, children, friends.  That’s different from caregiving for someone who has challenges with activities of daily living and different from caregiving someone who has diminished mental capacity, is acutely, gravely ill, or is dying. The value of technology for caregivers and the person in the center is to enhance information access, communication, tracking and scheduling. The farther along the continuum of intensity the lonelier it gets and the harder it is to carve out time for anything else, especially technology. What did we do before video links like Skype or FaceTime, before tweets, chat rooms, and social media?  They’re easy to learn, easy to execute, immediate gratification – limit  loneliness. Tracking and scheduling on paper and spreadsheets has been forever-apps have a learning curve. Searching the web is easy, but getting your personal health information is hit and miss and takes maintenance to keep accurate and up-to-date. Communication with and between health professionals remains, for me, the greatest challenge. Technology can help – but only for those who already prioritize communication. If you’re good at communicating, technology is a wonderful adjunct. If both parties aren’t good at it, technology is no help at all. The main dish of caregiving is person-to-person. Technology is the cutlery and the dessert.

Simple Gifts

By Family man One Comment
Last week a friend asked me, What’s your favorite song? So many went through my mind – really, my mind was paralyzed, I couldn’t think of any. So I said, Simple Gifts, the Shaker tune. We sang it at our wedding – after the ohmms. A question on the 41st anniversary of the day I met my wife. 41 years! We are blessed to appreciate simple gifts. Especially crawling between the sheets at night with each other. I love Jack Nicholson’s line to Helen Hunt in As Good As It GetsYou make me want to be a better man.  Simple gifts, a magic lever for best health. Have a good week.:)

That Sinking Feeling of Stress

By Advocate, Caregiver, Consumer, ePatient, Family man, Musician No Comments
You know that sinking feeling you get in the pit of your stomach when something is seriously wrong?  Often accompanied by inability to focus on the here and now (your music, your kids, your grandkids, your partner), trouble sleeping, mind racing? Happens when you get bad news, when someone treats you like crap, when you think you’ve made a serious mistake, grief. It’s the fight or flight stress reaction.  Today I got that sensation when I was playing my sax, trying to memorize a piece. I so struggle with memorization-always have-from the days of anatomy and trying to remember bones.  Anyway, I thought,why the heck am I feeling this stress reaction playing music?  I’ve felt it more often lately-stress at work mostly. It affects my sleep, I struggle to focus. It’s an energy sucker. I only have so much gas in my tank-I hate wasting it on this stress reaction. What can a person do? I’m not one that’s had success with meditation. There are some interesting tricks:  I do love the one of pressing on the space above my upper lip below my nose.  I think it’s so comical it helps for a second, but doesn’t last past the press. Focused breathing deeply always works, but again doesn’t last. Talking to someone, getting whatever off my chest occasionally works -and it lasts.  There’s compartmentalization, denial – I’m not too good at those either. My PCP gave me Ativan to take before I go to bed, but I haven’t tried it. Actually, just having it in the cabinet has almost eliminated my need for it. Powerful stuff, eh – proximity without ingestion. Stress is a part of life. Unavoidable, part of the human condition. The challenge is to keep the cycle short, less frequent.  How do people manage who have this sensation all day for days, weeks, months, years on end?  Must be crazy making. Managing stress is a magic lever of best health.

Focusing on the Basics

By Caregiver, Consumer, ePatient, Family man No Comments

I just want to focus on the basics! 

In life I reach for the sky. I’m wired that way. I’m frustrated by less. In my health journey or anyone’s health journey where I’m along for the ride I want the best possible health given the circumstances. However, its complex, it’s hard, it’s a long journey to the sky. So I think, OK, let’s focus on the basics.  The journey is built on the basics. But what are the basics? No brainer, logical, common sense stuff – the magic levers – good diet, sufficient exercise and rest, family/individual/work balance, stress reduction, an aligned team? Unfortunately, the basics shift, vary from person to person and from team to team. Basics can be the hardest to attain. When under new or added stress – the basics suffer. Good habits suffer. I learned from a fabulous grief counselor, to attend to the basics first, then I would be better able to handle the unmanageable, unpredictable stresses of death, dying, and grief. Eureka, it was true. Attention to sleep, diet, exercise increased my capacity and resilience. I need help with the basics – reminders, tracking, companionship. Lord, help me with my defensiveness and resistance to help.  I can’t make it without. So hard to accept. The health journey is paved with the basics.
Photo by Patrick Hendry on Unsplash

The Muscle Cramps of the Health Marathon

By ePatient, Family man No Comments
Who does what in a health team? Who has control? How does the team deal with questions of competence and capacity. The tension between rights and safety can and often should consume a health team. Can my mother live alone? (Of course I can!) Should my brother drive? (I only drive during the day!) I don’t want to take this medicine the doctor insists I take. (It reduces your risk of stroke.)  I can go to my doctor’s appointment alone. (You never come home with the full story.) Our dad wouldn’t have wanted any of this. (He’s our dad, we should do everything possible.)

Everyone I’ve ever spoken to who is a member of a health team – as the person in the center or caregiver – has a story about decisions, control, safety, competence. They all contain frustration, emotion, and consume much energy diverting from the health journey. These are the muscle cramps of the health journey marathon.
What to do? Some of these painful cramps can be prevented with foresight, openness, and active negotiation and problem solving.  But many can not. I talked with my mother annually for more than 15 years about end-of-life decisions. It wasn’t until several years ago that she could engage. It was worth the persistence. She’s clear now and has the capacity to be clear. When capacity is already diminished, caregivers can often have trouble recognizing that persons in the center of care have choices.  In these case, caregivers can emphasize safety over choice, to the detriment of the rights of the person in the center of care. When capacity dribbles away slowly its another set of challenges. Does the person recognize that their capacity is drifting? Do the caregivers have options to ensure safety – other caregivers, safer settings? In these cases the challenges can only be mitigated through open family communication, assigning of responsibilities, persistence and presence.  And self-care. No magic bullet here. How have you faced the muscle cramps?

Xmas: Honor the Caregivers. Help the Helpers.

By Caregiver, Consumer, Family man No Comments
92 million caregivers in the US. Lord, so many.  Only growing. How many of these caregivers need care? My wife, an occupational therapist, comes home with stories of 90+ year-old spouses taking care of their 90+ year-old honeys.  In health, the focus is often on the person at the center of care, the person with a diagnosis or with symptoms. Yet it’s their community that needs care – their health team. I remember when our son Mike was sick and dying. People wanted to know how they could help.  We spent quite a bit of time parsing out all there was to do into bite sized pieces that people could take part in. They’re entitled to express their caring and love. My suggestion for this holiday season is to name the caregivers among you, and contribute to their health.  Take something small off their plate-run an errand. Offer them the magic levers of best health: diet, exercise, rest, humor, distraction, spirit.
Please find my Holiday here. Be well. Keep in touch.