Category

Family man

Pillow, pills, poop, piss, and pain

By Caregiver, Family man, Podcasts No Comments
  • Blood, sweat, tears shared by two.
  • Helping one end and another begin.
  • A disaster that ultimately gives back.
  • Hearts clubbed by diamonds in spades.
  • We learned, we cried, we continued.

Episode Summary

Denise Brown of caregiving.com asked caregivers for their 6-word story about caregiving. Brilliant!

Welcome to Men Caregivers, Part 2, the Panel.  Part 1 was interviews with the panel, Ben Carter, Patrick Egan, Jolyon Hallows, and yours truly. All at the National Caregiving Conference in Chicago in November 2018.

Here are some of our 6-word stories:

  • We did it because we could
  • Pillows, pills, poop, piss, and pain
  • 20 years a caregiver. I adapted.
  • Key word isn’t ‘men’, it’s ‘caregiving’
  • Personal care? It depends? Mother, wife?
  • Managing the Dis Ease of Disease

Read More

May the Force…

By ePatient, Family man No Comments

Tragedy: the common unifying force of life, no matter your genetics, your circumstances, your behavior, your health. As you season the likelihood of experiencing tragedy increases. A tragedy can be a death, diagnosis of serious illness, break up, job loss, legal difficulties, downsizing, loss of a contract, loss of key staff, loss, loss, loss. Read More

Manage the Stress You Can

By ePatient, Family man 3 Comments

When my son, Mike, was dying I knew I needed help supporting Mike AND survive and thrive myself.  I went shopping for a counselor. No surprise to you – I am not an easy patient. But I was willing to do the work. My shopping eventually led me to three counselors.  The first, a friend highly recommended. This friend had survived leukemia with several years of chemo, stem cell transplant and heart surgery. His mental and spiritual health were shaken. I could see that this counselor had really helped him. I made an appointment. The guy popped Altoids Curiously Strong Peppermints the whole time. To keep himself awake? No go. Still shopping. The next counselor I knew from work. She was on my providers’ council. She asked questions. I answered. How did I feel…? I didn’t need talk therapy. I had family and friends. I needed a roadmap. How do I manage myself? The third counselor spent 5 minutes asking me about diet, sleep, exercise, pooping, my family, transportation. You have to take care of the basics to manage grief. Then he said, there’s stress you can manage and stress you can’t. Grief is stress that’s hard to manage.  There it is. It’s not going away. Now tell me your top two stresses in your life right now. That was easy. On top – My mother. (That’s another story for another day). Tell me more. I told him more, another 10 minutes. Then he gave me three things to try to help manage the stress with Ma. I spent 45 minutes of the allotted hour with him! He was a keeper.  I tried all three recommendations with Ma. I could pull off two. Rapidly less stress in that arena. Therapy from a master is worth shopping for! He’s still part of my team. I talk to him on the phone from time to time – like when I was first diagnosed with Multiple Sclerosis. Read More

Best Spiritual Health, Dying

By Caregiver, ePatient, Family man One Comment

Sixteen years ago on November 18, 2002, our son, our brother, our friend, Michael Funk, died of metastatic melanoma at age 26. Mike said that he wasn’t born with a tattoo on his butt telling him how long he had to live.  What a gift.  Mike was a gift. His perspective about dying was a gift. One day we were sitting at the kitchen table talking about dying and superpowers. Mike thought that he and I had the same superpower: we both accept what is. Yup, he died young. That’s life. You open your heart and tragedy just walks right in. What’s the alternative? Closed heart? Not for me.

Welcome, my dear Health Hats blog readers, let me introduce you to the birth of Health Hats, the Podcast. We are here to empower people as they travel together toward best health. Best health includes physical, mental, and spiritual health. Today’s blog post and podcast are about Mike who found his best spiritual health over the last year of his life, as he died. Read More

Best Health at End of Life

By Caregiver, ePatient, Family man, Podcasts 7 Comments

Episode Summary

Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn’t born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike’s journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty who conducted that interview, and stories about my experiences with Mike. Listen as we try to make sense of this reality.

Read More

Stoking My Fires

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

Success is feeling like I have too much to do two days a week, not enough to do two days a week and not thinking about it for the rest. Today is a too much day. I missed a scheduled call. I was writing this post and missed it!!  Too funny.  How do I manage when I actually do manage, you ask? Well, if my wife wants to do something with me, the answer is yes. Same with my kids and grandkids. Then my health routine – steps, stretching, strengthening, balance, and stress management. Playing my horn. Blogging weekly. Finally responding to requests from my network cronies, making money and advocacy. (Note: I am retired and my family is all independent and healthy). So really the slack for me is only in those last ones. And health is the blowing up wildcard.  When health dips, my spiel is BS.

My latest struggle is saying no to pro bono work. So many intriguing opportunities. But time is precious. Keys to time management success are well-defined commitments, deliverables, and timeframes; calendar, and task lists; plus strong partners and collaborators. Strong partners and collaborators make the work fun and efficient. The fun stokes my fires. This week the Society for Participatory Medicine’s one-day conference stoked my fire. What stokes yours?

Photo by Dominik Lange on Unsplash

Related posts

Values for Managing Health

Re-calibrating – Finding Balance

Need a recharge? Listen for what works.

 

Power, Fear, Lack of Empathy

By Leader, Family man, Advocate 6 Comments

Photo of Ruth and Ruben van Leeuwen circa 1947

I was riding my trike this morning at 6:30. It was beautiful, dry, cool, few people out. My pathological optimism has escaped me.  I needed serenity following my recent MS infusion. I was hoping that I’d find clarity for the post I started yesterday about health data, health research, learning, and adjusting. I’m underwhelmed by our collective ability to learn and change based on experience and evidence. Where do I go with this germ of a post?

But no, I’m getting more and more agitated with every pedal. First, immigration and refugees. Then Brett Kavanaugh’s Supreme Court nomination. I can’t shake it. No serenity, no nifty pearl for my post. Just escalating sickened outrage about power, fear, lack of empathy and its effect on our community well-being. Deep breaths, mindful meditation have no effect.

My parents, both Holocaust survivors, were not religious. But I heard Love thy neighbor as thyself often and I watched them live it.  My mom, when she finally began to speak about her experiences in hiding, emphasized her gratitude to the people who hid her at great risk to themselves. She would say, I wasn’t brave, they were.  I just survived. They were the heroes. The Trump administration is determined to wipe out immigration – both legal and illegal. It makes no sense to me. It flies in the face of decency, empathy, common sense, and evidence. Since this is a healthcare blog dedicated to empowering people as they travel toward best health, I’ll stick to that lens. Most people want to live the best life possible with their families, contributing something to their communities. This I believe. If they can’t be safe in the home, they want to move if they are able. If they can’t be safe in their countries, they want to emigrate. Even in the face of great risk. We in the US are fortunate.

Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore, Send these, the homeless, tempest-tost to me, I lift my lamp beside the golden door!

So we do the work to assimilate! Is that so hard? It’s moral, ethical, empathetic, right. Practically, the fastest growing occupations in the US are home health aides, personal care assistants, medical assistants, software developers, nursing assistants, and registered nurses. All positions facing shortages.  All positions affecting our communities’ health. Who do we think is going to take care of us and develop tools that support our care as we age? Immigrants.

Second, Brett Kavanaugh’s Supreme Court nomination in the face of accusations of sexual assault. Again, outrage about power, fear, lack of empathy and its effect on our community well-being. Our Senate Judiciary consists of old white men without lived experience of assault and powerlessness (or they haven’t come out yet). Maybe the most powerful office in the country with a lifetime appointment affecting the wellbeing of all of us.

OK, other people can opine on these topics better than I can.

For me, the central feature is power – the imbalance of power. Those in power want to stay in power at all costs. I think it’s a human condition of the ages. Evidence, curiosity, empathy, have little role. We know that this imbalance of power is evident in our healthcare business practices and our healthcare decision-making. Fortunately, I still have a reservoir of pathological optimism. My parents lived through the Holocaust, the country survived the Vietnam experience. I believe that there are cycles of learning and relearning, and relearning again. I believe that the response to power imbalance is to get more people with lived experience and less power a seat at the table, especially the tables of governance.  For immigration and our government, our power is in the ballot box. Elect people with lived experience who grew up farther from power and wealth. Please vote and help your neighbor register to vote.  And I’ll get back to my advocacy to bring more people with lived experience to the tables of governance, design, operations, and learning in healthcare delivery, business, research, and technology.

Related Posts

Dragging or Walking?

A Seat at the Table. Now What?

March Madness – TrumpCare

Pride Falls

By ePatient, Family man One Comment

I fell in New Orleans a couple of months ago flat on my face. No injuries, scraped my hands and arms. Freaked me out a bit and my friends. A week later, back home, I fell again. Same thing. My primary care doc and neurologist always ask, have you fallen? Falling is one of two outcomes we track together. (The other is, are you still playing your saxophone?) It’s been a long time since I’ve fallen. Outside. A year or more. I had to stop shoveling snow. I didn’t mind falling in the snow. Kind of fun. Worried my family, though. I do fall inside when I’m turning suddenly, like in the pantry or trying to vacuum.  I’m starting to be a bit alarmed about this increased falling. I stumble a lot normally but always catch myself. This is stumble and fall.  Not good. I worry about it at 2 am the apocalyptic hour.  Otherwise, I’m pathologically optimistic and flex my superpower: accepting what is.

I met a buddy (we’ve been dear friends for more than 40 years) in Washington recently. He wanted to go to the National Gallery.  He suggested we rent a wheelchair. I’ll push you, then we can spend more than 30 minutes looking at the paintings. He knows that my sightseeing endurance has been steadily decreasing. We spend more time to rest me each time I see him. I was reluctant.

My wife wants to travel. I’ve been resistant. I just don’t have the stamina anymore. I’ll be a drag. But, I love having adventures together (the nonhealth-related kind).

After the falls, I was in Baltimore for a meeting. I was telling a colleague about my falls. He uses an electric wheelchair, collapsible, with a joystick. He said I should consider getting one. He’s an amputee. He can walk most of the time quite well. Often the wheelchair will spend four months at a time in his garage. He doesn’t need it. But traveling can be wearing. It collapses and he can gate check it on the plane. Weighs 50 pounds. Folds with the pressure of one finger into the size of a medium size suitcase. Has a range of 14 miles. It’s 23″ wide. I’m intrigued. As a habitual doer, I bought one two weeks ago.

I feel like a charlatan. I can walk. I’m not paraplegic, I didn’t have a stroke. My chiropractor said, as long as I keep up my 3500-4000 steps a day, think of the wheelchair as an extender, not a crutch. What’s wrong with a crutch? I use a cane. Anyway, I’m testing it out. I’ve been aware of community accessibility issue for a long time, but now I appreciate every slope, every intersection, every pothole and crack, every lip that’s greater than one and a half inches. I’ve had to get out of the chair and right myself several times. That feels ridiculous.

When my mom starting falling, I suggested that she get a cane. Oh no, honey. That would be silly. I don’t need a cane. It would look ridiculous. I said, Ma, I use a cane. Do I look ridiculous? She replied,  oh, no honey, I’m so glad you’re safe. It’s a great accessory for you. No irony.

So, anyway. Sigh. Soon I’ll be comfortable enough motoring around in it. (I need to give it a name). Next, I’ll have to take it traveling. Ok, maybe I’ll feel a bit ridiculous. Pride recedes, Europe on the horizon.

Related posts

Passover

Disabled. Looking for Work. Reference

I am Not My Condition

 

Appreciating Empowerment

By ePatient, Clinician, Family man One Comment

My wife and I spent some time trying to adopt a teenager after our son, Mike, died. We chose the adoption agency because, with them, the child made the decision whether or not to be adopted by us. The teen with whom we developed a relationship decided not to be adopted by us. Hard for us, but success for her! Empowered adoption. The clowns of Laughter League at Boston Children’s Hospital poke their heads in the room, May we come in? When the child says, No, you can’t come in my room, it’s success! Empowered hospitalization. Katherine Treiman at RTI shared an article with me about self-dialysis, Is “Empowered Dialysis” the Key to Better Outcomes? People connect themselves to their machines, draw their own blood, clean up the dialysis equipment themselves. More training time, lower mortality rates. Empowered dialysis, empowered hospitalization, empowered adoption. Wow. Radical. Controlling our own lives. A person, not a patient. What a thought.  I know the fatigue and stress when I feel powerless. My MS symptoms are much worse. I feel better when I’m in control. What I really like about empowered decision-making is that it doesn’t matter what decision is made. The physical, mental and spiritual benefits of empowered decision-making and care may be tough to measure. Is that because we don’t measure it or because we don’t know how to measure it? Still, we should practice it, appreciate it’s wonder, and learn to measure it.

Photo by chuttersnap on Unsplash

Related posts

 

Reading the Room and Yourself

Managing medications: Experience of empowered & engaged partners

Cuz I’m the Dad! That’s Why

Once Again – Stranger in a Strange Land