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Mom – Free of Her Alzheimer’s Prison

MomMy mother, Betty Louise (Stetson) Torrey, died this week.  I’m sad, mourning our loss, and grieving, of course.

But I also rejoice!  Because more than a decade of Alzheimer’s disease had ravaged her brain, and her body, and she was not Mom for many, too many years.  She is now free of that prison.

I wish you could have known my mother.  Intelligent and funny, caring, talented and clever, she brightened a room when she walked through its door.  She had a beautiful singing voice which graced school auditoriums and church sanctuaries, and a mean golf swing which found its way through more than two dozen countries across the globe, and resulted in three holes-in-one!  She loved the Buffalo Bills, the Buffalo Sabres, and Syracuse University sports.  She was a master calligrapher and could cross-stitch her way to the moon and back.

All that and more.

The “more” came in the form of being a loving and supportive partner to my dad and, from my own perspective, a great mom and grandmother, too.  The life lessons she shared were the basics — cooking, cleaning, etc.  But more than that, my sisters and I learned concepts that have stood the test of time and have made us better people.

So my tribute — this post — will be about sharing two of those life lessons with you, so you can understand better what I mean.

Mom was a fantastic and creative seamstress.  Each Halloween she would put together the most glorious costumes for my sisters and me — and sometimes for herself and Dad, too.  When Mom was pregnant, she made herself a kangaroo costume. In second grade, I was a Christmas tree.  A couple years later, I was the organ grinder and my younger sister, Barb, was the monkey.  Seriously.

Fast forward 25 years, I would do my best to sew fabulous costumes for my daughter, Becca, too, beginning when she was only a year old.  But when Becca was in second grade, all she wanted was a $5 costume from Kmart!  All I could think was, what kind of a lousy mother would just spring the $5 for a cookie cutter costume from Kmart?  It was a conundrum, for sure.

So I shared that conundrum with Mom, in hopes she would understand the dilemma.  But she didn’t understand it at all — because to her way of thinking, the point was to make Becca happy.  And if Becca was happy with a Kmart costume, then so be it.

In other words — the outcome was far more important than the process.  A good lesson.

Many years later, and up until about 2001, Mom and I played golf in the mother-daughter golf tournament each summer. This particular golf tournament was an annual event which was won by the same 2-3 mother daughter pairs each year — because they were all good, competitive golfers.

I’m not that golfer.  I play against my own previous scores, but don’t really care about beating someone else.  I’m more about the fun, the fellowship, and enjoying a beautiful day.

However, undaunted, Mom and I would play our best.  If you won the tournament, there were some very nice prizes to be had.  And, if you won the tournament, you were put in charge of the tournament the following year.

So each year, before we teed off on the first hole, Mom would remind me that our goal was to come in… second.

The lesson?  That sometimes you win bigger by not being first.

It’s not easy losing a parent.  I’ve been learning that for many years through the fog of Alzheimer’s, and I’m learning even more about it now.  We’re fortunate that Dad is still with us – as sharp and vital as ever.

We’re at peace with losing Mom, even through our mourning.  Over time, I’m sure that the sadness and frustrations wreaked by Alzheimer’s will be fully replaced and obscured by the happier memories of her first 75 years.

I hope you and those you love will never have to suffer “the long good-bye” of Alzheimer’s Disease.

Rest in peace Mom.  I will always love you.

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Swine Flu and Chicken Little – Too Much Hype?

After a week of hearing that the sky is falling because swine flu was going to take us all down, there’s a lot of second guessing about whether government(s) and the media have over-hyped the potential for a pandemic, and whether we have all over-reacted to the fear.

chickenlittle1I say – we have not overreacted – but I worry about Chicken Little.

The initial reports from Mexico indicated real potential for problems.  Governments, WHO and the media were in a d*mned if they do and d*mned if they don’t position:  Had they NOT reacted, then I guarantee you, the flu would have spread faster, further and more people would have died.  Then they would have taken the hit for not reacting appropriately– like George Bush deservedly did for Katrina — and we would all be left behind cleaning up behind the mess.

So I believe the reaction and the hype, and the reminders about the impact seasonal flu has on all of us, are warranted. I, for one, appreciate it.  Lives have been saved.  Awareness has been heightened.

That said…

I actually have more concern about the next time around. Whatever virus mutates, whether it be bird flu, swine flu, or hippopotamus flu — no matter which one it is — will we all be (pardon the pun) immune to the hype?  Will we ignore the governments and media who try to prepare us to keep us safe?  Will we go about our daily business tuning them out?  Will we turn a deaf ear because “remember swine flu?  no big deal!”

Chicken Little (who may be carrying bird flu, by the way) reminded us that the sky CAN fall when we don’t pay attention.  So the real point is that we need to be prepared with falling-sky contingency plans.  That’s what WHO does.  That’s what governments do.  That’s what media reports.

We just need to be sure we pay attention and take action, regardless of how hype-y it seems to be.

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Some Light Reading and Good Dinner Conversation

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Lest you think patient advocacy is all about sticking up for yourself through doom and gloom, I thought I’d share this piece from Prevention Magazine.  I enjoyed it, and learned something from this baker’s dozen of tips. Maybe you’ll learn something, too:

  1. Why do we laugh until we cry?
  2. Why do onions make us tear up?
  3. Why do our joints crack?
  4. What causes goose bumps?
  5. What makes an eyelid twitch?
  6. Why are we always cold?
  7. Are our ears still growing?
  8. Are all babies born without freckles?
  9. What causes pins and needles?
  10. Why do we see halos around lights?
  11. Are “crankles” good for you?
  12. Can gum and cheese help your teeth?
  13. Why do we get side stitches?

One aspect of being a smart patient is being an informed patient.  While few of these will actually help you heal or navigate the dysfunctional American healthcare system, at least they’ll give you something to talk about over the dinner table with your family — a very healthy family activity.

Enjoy!

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Wall Street Robber Barons — Killing Americans?

The incredible anger of all Americans at those greedy S.O.B.s who have been running the banks and investment houses that are already robbing Americans of their hard earned money, will ramp up further at this revelation:

As you may know, the number of uninsured Americans is typically quoted at 47 million. We learned that last year those numbers were reduced to 45.7 million– not because more Americans can now afford insurance; rather, because their income had declined to levels that made them eligible for state healthcare assistance programs.

But in thinking that through, I realized there is a ripple effect, too. With the tanking of the economy comes layoffs, and with layoffs come even more people whose income will decline and, of course, that means they may not be able to access healthcare. Not all will become eligible for care through the government. In many cases, they will simply be left off the healthcare roles — no more coverage for them will mean no healthcare at all. Not for them. Not for their children either.

Which then led to another thought. The Commonwealth Fund reported in January that 101,000 people died last year from problems that would have been prevented if the person who died had health insurance. Do the math. 101,000 deaths. 45.7 million uninsured. That’s 22 uninsured people who died for each million who didn’t have insurance.

Now let’s look at what’s beginning to take place as a result of those greedy Wall Street CEOs who have caused our economy to decline, and who will be responsible for millions more job losses. For each million people who lose their health insurance because they’ve lost their jobs, 22 will die.

In my not-so-humble opinion — that’s blood on the hands of those Wall Street criminals and robber barons who have reaped millions of dollars for themselves, while denying the rest of the world its stability. This isn’t about people jumping off buildings and bridges because they’ve lost their savings. This is about people — responsible and hardworking Americans — who will no longer be able to pay for the care they need, have earned, and deserve.

Maybe those very guilty CEOs can’t be arrested for bad business dealings. But certainly they should pay for the deaths they will cause?  And what about the families left with no one to support them because their loved one has died?

These dominoes are huge and destructive.

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Ulterior Motives for Eating Disorders, Too

I had lunch today with a long-time friend, Mindy.  (No, of course that’s not her real name…) It’s been at least a year since we saw each other, and probably two since we had a long conversation.

My heart broke as I learned that her daughter, Lindsay (not her real name either) has, for lack of a better description, gone right off the deep end.  I’ve known Lindsay since she was only 11 or 12 — a bright, articulate and curious adolescent.  In more recent years, I knew Lindsay had developed eating disorders.  She is anorexic and bulimec, and is almost 18 years old.

Lindsay’s eating disorder is only one in a long list of problems she has acquired during the past few years.  She has abused drugs, has been in trouble with the law, and is dealing with some other mental health issues as well.

Her mom, Mindy, has struggled to do the right thing, but of course, as parents, we never really know if we are doing the right things by our children.  Mindy shared some aspects of how they have tried to help Lindsay.  Her findings sounded remarkably like some of the advice I share with you on occasion.  It bears repeating, with this different light.

At one point, Mindy contacted programs for girls with eating disorders.  There are at least four of them within 150 miles of where Mindy and Lindsay live. Some are day programs.  Others are residential programs.  Mindy contacted them all — in fact, visited them — and learned that each one happened to be exactly the program Lindsay needed!

At least, that’s what they each told her.  Each program was different, using different approaches to treatment, but according to the people who ran them (and, do I need to add, the people who would be paid by Mindy’s insurance if Lindsay attended their program?) each of their programs was just right.

This should sound vaguely familiar.  I’ve blogged before about doctors who advise us about treatments, but may have ulterior motives for their recommendations. My misdiagnosis odyssey was my first experience with this.  I accused my oncologist of insisting I begin chemo because it was the only way he could make money from me.

My friend Max was told he needed prostate surgery and he should undergo a minimally invasive procedure.  After studying options on the internet, he learned that an even less invasive, and less trying form of surgery using a robot might work even better.  So he asked his surgeon about it, and was told that NO, he certainly didn’t need to have the robotic surgery…. then learned later that the surgeon he was asking didn’t know how to do the robotic surgery.  Hmmmm…..

The literature is rife with examples of doctors making money, sometimes discreetly or even under the table, from the treatment recommendations they make.  Whether they are investors in specific medical device manufacturing companies (think artificial body parts) or drug prescriptions (think subsidies from pharma drug manufacturers) — the recommendations being made to you may have more to do with lining a professional’s pocket than your treatment success.

One disclaimer here — I do not believe a doctor would knowingly recommend a treatment that would harm you just to make money.  But, I do believe there are times when, all else being almost equal, the first consideration would be money, followed by your success or with little regard to the expense to you.

For example, if you had a history of knee pain, your doctor might recommend your knee be replaced today, even though therapy might help you for another year or two.  Of course, he wants to replace it using the brand that pays him a kickback fee.  But you don’t know that, nor does your insurance.  And don’t forget, most of these artificial joints have a shelf life — meaning — if you get one two years earlier than necessary, you will need a new one two years earlier, too.

It seems to be true enough in healthcare — whether we are talking about brain surgery or eating disorders — that we need to find someone who can help us consider the evidence much more objectively.  That means we either have to find someone who can help us with all the options, or — even preferably — someone who won’t handle any of the options.  In Max’s case, he was able to find a surgeon who did both the minimally invasive surgery AND the robot surgery.  He told Max the robot would serve him quite well.

And in Mindy’s case — she was able to find an advisor in anothor city who had no ties whatsoever to any of the available programs — one who knew all about the other programs in that 150 mile radius, and who was able make a recommendation based on that knowledge.  The advisor wasn’t in a position to benefit her own program, so she was able to make a more objective recommendation.

Let’s learn from both scenarios.  If you are in a position to need difficult, invasive or long term treatment, make sure you get at least a second opinion.  Then find someone who either can provide you with ALL the choices, or someone who doesn’t have a stake in ANY of the choices to help you get more objective advice before you make your final decision.

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