How Glenn Miller, Johnny Mercer and the Andrews Sisters Helped Dad Weather His Pain

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I’ve just returned from Florida, having spent almost two weeks with my sisters, taking care of details since Dad died.  There were plenty of tears – of course.  But even more laughter – because despite our mourning, we shared many marvelous family memories as we uncovered this treasure (good grief – our grade school report cards!) or that one (did we really wear our hair like that in the 80s?)

And of course, there were the conversations with the more than 100 people who attended Dad’s memorial service. (Quite surprising really – they were mostly in their 80s and 90s.) It was a memorial service like few others –  exactly what he requested – a celebration – a party! …including an open bar and hors d’oeuvres afterwards.  The readings and passages were part-mournful, but more than that, they were an homage to a man loved and respected by many.  My sisters and I were so very proud of the man who was our father.

Included in the celebration service was music, of course.  But not what you might expect.  Instead we put on a Glenn Miller CD, and a mix of other music from the 1940s. In the Mood, Candy, Boogie Woogie Bugle Boy —   Dad would have loved it.  I know his friends did.

The music – it was an important part of Dad’s life – and his death.  In fact, through his final few days, I asked his hospice nurse to turn on the TV cable channel that plays1940s music – because it brought him so much pleasure to listen to the songs he shared with Mom as they were dating, fell in love and married.  It seemed to work well, taking his mind off his pain, as he finally relaxed, slept, and then passed.

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The Lessons We’ll Learn from Dad

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My father, Richard F. Torrey (known to friends as Dick), passed away yesterday, Sunday, September 30th. He was a remarkable man who led a remarkable life.

I tell you this because part of Dad’s legacy is going to be the healthcare and advocacy lessons we learned along the way. Dad as patient. Daughter as advocate. A treasure trove of experiences.

Over the years I took note of the many – MANY – experiences we had through his health journey.  But I haven’t written about many of them….  As long as Dad was still alive, there was privacy to consider and maintain.  He and I talked about that many times.  Something notable would happen, we’d wend our way through it, then he would tell me, “Write that one down – it will be a good one to share someday.”

Dad was diagnosed with prostate cancer in 1986 – yes, you read that right – 26 years ago. (By the way – that was before the PSA test existed for diagnosis.)  He had surgery that year, but some of those cancer cells escaped.  So Dad dealt with the disease for the next 26 years. You can imagine what we learned along the way about the healthcare system – both good and bad.

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It’s Fair to Say “I Don’t Know”

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Nobody can ever be expected to know everything about everything at the moment they need to know it.

Yet, if there’s one thing I’ve learned about medical providers – and health advocates, too – is that there is a major reluctance to say “I don’t know.”

It’s as if the fact that they don’t know something reflects on their ability to be useful. As if they are “less” because the answer isn’t right there in the front of their brains and rolling off their tongues.

I just don’t think that’s true or fair.

Whether it’s the psychology of dealing with patient-clients, to the databanks of information about any specific disease, to the ability to predict an outcome, to the “facts” of health and medicine (remember when margarine was better for you than butter?), the amount and nature of knowledge changes from minute-to-minute to day-to-day to year-to-year.  There is no one in this world that can know everything or have every answer at any given moment.

Therefore, it’s absolutely fair to say, “I don’t know,” or “I’m not sure,” as long as it is followed by, “But I’ll try to get the answer for you,” or “But we can look that up together,”  or some other promise to acquire the information.

Yet, I have watched and listened to providers (the most arrogant of them) give a half-answer, or a non-answer, or even an invented answer, rather than admit they aren’t up-to-date on something.  You have, too.

And I’ve heard from advocates who are afraid to pull the trigger to go into business because they are afraid they don’t know as much as they think they should know. (There is a good chance they’ll never know enough – because their personal bars are set so high that their goals will be unattainable.)

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Start and Grow Your Independent, Private Advocacy Practice – Coming Soon!

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Coming Soon!

I’m happy to announce that my next book is now in the hands of the publisher, in the final stages of being edited, prepped and printed:

The Health Advocate’s Start and Grow Your Own Practice Handbook – is on its way.

Pre-orders are now available (through October 1.)
($10 off the total of cover price, plus shipping and handling).
Pre-ordered books will be mailed on or before November 1.

It’s a step-by-step guide, covering soup to nuts, for starting a one person, solo practice or a partnership of two or more people.  If your intent is to start up a multi-national corporation, then no – this book isn’t going to do that for you.  But if you have some good advocacy experience (navigation, billing, therapy, mediation or others) and you wish to start your own practice, for-profit or non-profit, then this book can get you there.  It includes details for advocates in both the United States and Canada.

And – the book comes with a bonus!  (See below)

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Don’t Let Your Cause Be the Cause of Lost Business

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With the national presidential conventions behind us, and particularly if you live in a swing state, you know that the political campaigning, dressed as attacks and vitriol, is only revving up (as if it can get any worse?)

This presidential election will be the first one that social media – like Facebook, Pinterest and Twitter – will be used by the mainstream to share opinions and information.  Possibly for the first time, you’re going to learn what your friends and followers, and those you follow, think about which candidate – and why.  You’re going to learn more about them than you ever knew, and I guarantee that if you spend much time on social media, you’ll be surprised, and in some cases, disappointed or even shocked by the things some of them have to say.

Some will make snide little comments. Others will be downright nasty. You’ll agree with some. And sadly, there will be others who you will never like, or respect, again.

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In the Absence of Certification – a Code of Conduct and Professional Standards

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As private, independent health advocates are very aware, there is no nationally (or internationally) recognized certification for our profession.  As such, there is no recognized – or expected – set of behaviors or standards for our profession either.

What exactly does that mean, and why does it matter?

Let’s put ourselves in our potential clients’ shoes for a moment.

With no rules and no set of expectations – what makes potential clients think they can trust us?  They find an advocate’s name online, talk to them on the phone for a few minutes, and – what?  Send them money?  Put their faith, health (and possibly their lives) in that advocate’s hands?  Based on what?

When a patient goes to the doctor, that doctor has a list of credentials that at least say “OK – this doctor went to school, passed tests, and probably knows the stuff you need him or her to know.”  Those credentials include degrees, certifications and licenses. The same is true for many other service providers – from realtors to teachers to hairdressers….

But not health or patient advocate or navigators.  Granted – those advocates and navigators who have nursing or physician backgrounds have a good start.  But still…  no nationally recognized set of standards for the profession of health advocacy.

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Don’t Shoot the Messenger

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Something I’ve noticed over the past two years or so is that people who write to me for help seem to be getting increasingly belligerent when they don’t like the information I share, or reply to their questions or requests.

Three examples:

A woman wrote to me through my About.com Patient Empowerment site, asking me to please make a phone call to her psychiatrist to tell him that she needed a higher dose of Xanax.  I replied to her to say that first, I don’t work directly with patients – I write and speak and run an organization.  Further, that I would never consider phoning someone’s doctor to tell them what to do! Further, that I don’t deal with mental health issues at all – I just don’t have any sort of knowledge bank that could help me do that.  I was polite, I suggested she make a list of reasons to share with her psychiatrist that might help him help her, etc.  She wrote back…

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Private, Independent – and Potentially Confusing

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There is a drug I take, which I have taken for years, which I order from one of the large mail-order benefits companies.  Every 90 days or so, I log on, wend my way to ‘refill your prescription” and wait for a few days until it arrives.  It’s a beautiful thing.

Last week – not so much.

Last week I tried to order my refill, and instead got a notice that they don’t have any in stock!  Not only that, they weren’t sure when it would be in stock again.  Say, what?  This is a standard, everyone-takes-it generic type drug.  Nothing fancy.  And they don’t have it in stock?

So I phoned to find out when it would be in stock. After pushing all those “if you’d like to do this, then press this” numbers, the final message was to “Please hold for a patient care advocate.”

A patient care advocate?  (Hold that thought).

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