MIM - going into hospice

Words fail.  Mim's doctors were clear LAST WEEK about her prognosis.  BUT apparently weren't able to get the wheels rolling for her to enter hospice care, my guess is because the biopsy results weren't in.  

Apparently, now they are.  Mim informed me she filled out the paperwork for hospice care.  A week after being admitted, a week after her physicians said there wasn't anything they could do.

I want to slug someone.

By the way, Mim sounds tired, like her mouth is totally dry, but her spirit still shines through, even on the phone.   

(I will update her address as soon as I have one.)

MIM - something you can do for her

I cannot get over to see Mim until Friday.  When I go, it would mean the world to me to take a LOVE Chain with me - a chain of brightly colored paper links, each bearing a few words or a short quote, with your name.  

If you would like to submit a few words or a short quote, please send it to auntdeev@aol.com.  

Thanks for all the thoughts, prayers & love...

MIM 06/30/15

Great news yesterday - called friends of Mim on Sunday night to share concerns about her physician insisting on giving her IV nutrients when she doesn't want them.  She needs an advocate.  

Mark said, "I have good news.  We went over last night & things were exactly as you describe - the doctor had steam-rolled mim into getting IV nutrients, but her body couldn't handle them.  She got what she didn't want & they weren't giving her what she did - a mouth wash of cold ginger ale.  We made it clear to the medical staff - 'Mim makes the calls.  If she wants it - get it.  If she doesn't - don't do it.'"   I felt so relieved, knowing Mim has ideal advocates.
Praise be, I didn't kill the car.  The smoke & sound & awful smell was due to a hole in the water container, which overheated when the ignition was left running.  Waiting for a part, which might take several days.  Cost should be under $300.  (The car friends lent us conked out with fan belt problems;  we have another friend's car to Thursday afternoon, if we need it - over a full week of coverage, thanks to awesomely generous friends!)   

The earliest we can get over to see Mim is Friday, hopefully with Peter.

Thanks for the love & prayers!

Ted Cruz & the Constitution

 

No Republican will be hit as hard by the past week's SCOTUS rulings as Ted Cruz.  I recommend everyone read his article in the current National Review, which includes the following:

Not only are the Court’s opinions untethered to reason and logic, they are also alien to our constitutional system of limited and divided government. By redefining the meaning of common words, and redesigning the most basic human institutions, this Court has crossed from the realm of activism into the arena of oligarchy.

Senator Cruz graduated CUM LAUDE from Princeton, with a B.A. in Public Policy.  At Princeton, he participated on theAmerican Whig-Cliosophic Debate Panel, winning both the 1992 U.S. National Debating Championship and the 1992 North American Debating Championship.  He was named U.S. National Speaker of the Year.  He was part of a pair representing Harvard Law School at the 1995 World Debating Championship, making it to the semi-finals.  Princeton's debate team later named their annual novice championship after Cruz. 

His senior thesis at Princeton was on the separation of powers -"Clipping the Wings of Angels" argues that our founders intended the Constitution to protect the rights of their state constituents, that the last two items in the Bill of Rights provide an explicit stop against an all-powerful federal government. 

At Harvard Law, he graduated magna cum laude.  He was a primary editor of the Harvard Law Review & the executive editor of the Harvard Journal of Law & Public Policy, as well as a founding editor of the Harvard Latino Law Review.   Small wonder that one of his professors – no less than Alan Dershowitz, says, "Cruz was off-the-charts brilliant."

Ted Cruz has always considered upholding his interpretation of the Constitution as core to his practice of law & his whole reason for entering politics.

If you do not understand all of the above, you cannot begin to understand what makes Ted run.
 

Knowing all this, what surprises me is that Ted was totally unfazed by the Supreme Court's Citizen's United ruling, that he didn't consider equating money with the free speech of our citizenry, where corporations were given every right of a citizen without a single similar responsibility.  That ruling he considered right & proper.  Fascinating.
 

True grit - MIM

Reposted from older2elder....

 

My sister is in the hospital. As she tells it, her doctors hold out no hope for a recovery.  John, my brother & I visited her on Friday (she is a distance away - we are outside Philadelphia & she's at the Jersey Shore).  It's been tough describing her to friends who ask, "How is she doing?"  I've described her as showing grace & humor, coming up with running gags with staff & generally being a hoot.  But an article I just spotted from AARP just gave me the perfect answer - "She's showing her usual true grit."

Mim looks like a very ill 30-something, not someone over 71.  Nothing about her says "older person."  She is young.  And for all the 63 years I've known her, she's always has remarkable grit, a quality that serves all of us, but perhaps no one as much as it does the aging aged elderly.  

Tenacity, perseverance, resilience - the underpinnings of GRIT.  Throughout her life, my sister has shown all three.  Once she focuses on a goal she wants to achieve, she sticks with it until its done.  

Mim has a remarkable level of determination & self-control, two qualities I've long admired in her & wished were more mine.  She knows what she wants & pursues it.  Quietly, relentlessly.  Even now, she doesn't have the energy to pin the doctors down & get them to do what she wants, but she lets us know.  Seriously ill, she retains incredible inner stamina.  That's grit.
 
Angela Duckworth, who knows a thing or two about the topic, says, “Grit is passion and perseverance for very long-term goals.  It's living life like it's a marathon, not a sprint.”  Christine Whelan, a consumer science professor at the University of Wisconsin - Madison, describes grit as, "Getting yourself through the hard stuff right now because you perceive there will be a meaningful outcome at the end." 

Mim models that however many or few moments we might have left, we can always look toward a meaningful outcome at the end of our moment-to-moment efforts.  She has a lot of hard stuff right now - and the tenacity, perseverance & resilience to work with & through it.

My sister continues to leave me in awe at what she accomplishes when she sets her mind to it.  

• She received her bachelor's degree from New York University in her late 30s, a pioneer student in what was then an experimental program for non-traditional students - she commuted (from Philadelphia!) three nights a week for the first year, two the second, and the third was as needed.  In her 40s, she received her MSW from Rutgers University.  How she balanced school & related costs & living expenses, I never knew.  But she did.  That took grit.
• Mim was such an exceptional volunteer with autistic children, she was officially recognized for it by the New Jersey legislature - with a very official & grand proclamation to prove it.  That took grit.
• When I was little, she coached a boys' football squad, organized several clubs for us neighborhood kids, single-handed put on fabulous 3-night camps in our backyard.  A hard fast rule was that NO ONE was allowed to go home during camp, even if you lived right next door.  No exceptions, unless you cleared it first with Mim.  That gave us all a sense of really being away.  That took grit.
• To this day, people come up to me to say how much Mim changed their lives, teaching them how to study, how to apply themselves to getting a project planned & completed.  She taught them grit.
• Where I work best in a group setting, Mim works best one-on-one.  One-on-one, she's worked with autistic children & their families.  One-on-one, she helps her friends see their gifts & graces.  One-on-one, she stays connected to her core famiy - by birth & of the heart.  That takes grit.

 

Right now, Mim faces challenges beyond my imagination.  One thing I know for sure - she's bringing her trademark true grit to each moment.  She will, once again, set the bar for tenacity, perseverance & resilience.  The grit that got her through being a unique houseparent to kindergartners & first graders at Girard College (K-12), taking them to a friend's farm in the country for an overnight, introducing them to projects & flat-out silliness they'd never experienced before & I'm sure have never forgotten.  That helped her be a second mother & invaluable friend to so many children in so many places.  That made her an anchor for so many people facing challenging situations & heartbreaking times.  All the qualities that make her MIM.

Even now, with all she's going through, she embodies grit.  

They might not ever make a movie about Mim - but, then again, they might.  Maybe, no one will write a book about her - but, then again, they might.  She might be only known to a relative handful of people - but to us, she is unforgettable, embodying determination & action, tenacity perseverance resilience.  A woman with true grit.

MIM 06/29/15 6:00 a.m.

 

It's impossible to describe how it feels to have years of deep background & personal experience with patient advocacy & be so many miles from my sister when she needs that so very much.

From what Mim tells me, the doctors hold out no hope.  She seems to have absorbed & accepted that, which doesn't surprise me.  She's  always expressed a whole view of death.  We had two great examples in how both our parents approached their own deaths & Mim seems to be blazing her own similar trail.  

But being okay with the idea of death is a far cry from being at peace with the thought of dying.  This is where I'm so frustrated.

Apparently - and I haven't talked to anyone on her primary medical team (and the person who does isn't readily available - Mim can't eat or drink anything.  From what she said when Peter, John & I were there on Friday, she is okay with that.  The stages she expected, from what a doctor apparently said, is that she'll go into a state of malnutrition, then die.  However, it seems that what's okay with Mim isn't so okay with her physicians.

Yesterday, Mim said her doctors want her to receive IV nutrition.  She made it clear - at least talking to me - that's NOT what she wants.  But she hasn't the energy to fight for her preference.  Which is the #1 reason patients need an advocate willing to take on the fight - patients, even ones in for a relatively minor procedure, can know what they want, but not be physically or mentally or emotionally able to go to the mat for it.  

NO ONE on the face of this earth is as fine a patient advocate as out niece, Whitney.  She put us to shame.  This was years & years ago - she was in her very early twenties.  Mom's medical team wasn't doing what Mom clearly needed.  Where we approached it diplomatically - our mother's daughters - Whitney pinned the head nurse to the wall & told her in no uncertain terms that she WOULD do what Mrs. Lockhart needed done, WOULD contact the physician RIGHT now & get his okay for whatever would relieve her grandmother's constipation & she - Whitney - wouldn't leave until it was DONE.  Whitney modeled the perfect patient advocate - she knew what Mom needed & wasn't getting, knew who needed to give the approval, knew that the only way her grandmother would get relief was through the woman she had pinned to the wall.  And it happened.  Neither Mim nor I ever forgot seeing our petite & powerful niece set the bar for patient advocacy.

THAT is what Mim needs, right now.  But Whitney is a world away, in Melbourne, AU, while I'm left high & dry here in SE PA. 

Even if I had wheels, I'm 60 miles from Toms River.  Ideally, we'd have two cars & John could cover, as he does so well, dinners with our older friends & I could spend most of the day & a good part of the evening with Mim - doctors often don't stop by until after visiting hours.  

At this moment, a 2nd friend has lent me her car for the day, but that's for local errands & getting her mother to dinner tonight, not for mad dashes to & from the Jersey Shore.  

There is a friend who has been visiting Mim practically every day.  I am asking her about taking on being Mim's patient advocate.  She can't spend the time there, but she is a force of nature, someone I'd trust would move heaven & earth to let my sister's medical team know what Mim wants done, along with the tenacity & temerity to kick up a fuss, if need be.  Will be talking to her later today.  Fingers crossed.

I spent almost 25 years in the health care benefits field, a marketing & public relations writer.  How many articles did I write over the years on being an effective patient advocate?  How many mentions of it did I include in executive speeches?  How many times was it featured in a flyer or brochure?  

Perhaps the #1 thing I took from my years at US Healthcare & Prudential was the realization that doctors, hospital staff & many families expect PATIENTS to speak for themselves.  How realistic is it for someone flat on their back in the hospital, all sorts of tubes & wires connecting them to this & that, to dredge up the wherewithal to be the ideal assertive patient?  How many of us have a clue how to do it, even when we're in the best of health?

Few people have the background & depth of experience I have in patient advocacy, all due to happenstance totally outside my control.  But I can guarantee that if I was in Mim's situation, all of that knowledge & hands-on experience would mean nothing.  I wouldn't be able to dredge up the basic energy to make a fuss, let alone take on a fight.

Doctors want to do what doctors want to do.  It's often not what the patient wants, not even - it seems - what's always in the patient's best interest.

Mim believes that her situation is terminal.  If it is, what she does NOT want is to drag it out.  If it is, she wants to be released as soon as possible from a body that no longer serves her.  Makes sense to me.  

Whatever their reasons, most of the doctors I've come across HATE death - many seem to take it as personal affront to their abilities as physicians.  And in despising death, they can tend to prolong a patient's dying.  Yes, they can give Mim nutrients which would keep her failing body from total failure.  But who's being served by that?  Not my sister.

 

Mim needs a patient advocate.  I live 60 miles from her.  Non-family members visit every day - it's wonderful for Mim, reassuring to her out-of-state family AND patients with regular visitors are likely to get superior care from the staff.  Her friend, Barbara, is acting as on-site liaison.  I should be planting myself by her bedside, gettingto know the staff & creating alliances for her care.  I should be over there, but we don't have one car of our own, let alone the two we need for me to be there & our clients to be covered.   

Am feeling better, being able to write this out.  The fact is, Mim needs me - as the sister I was born to be & the patient advocate I've become - and I'm 60 miles away.  Even if I had wheels, the wear & tear on my own health - it's a long drive to & from, heading home possibly as late as 10 p.m. - could be ghastly.

Ideally, the friend who visits almost every day will be able to take on some patient advocate support.  

Ideally, I'd be able to be there every day, for as long as it takes to see her doctors & make her wishes known/followed.  

Ideally, they'd have Whitney to contend with, our petite & powerful niece pinning them to the wall, letting them know, in no uncertain terms, that they WILL do what her aunt wants & she wouldn't leave until it's DONE.