Eric Piehl comments on caring for a loved-one whose mind and/or body is falling apart

Introduction

If, three years from now, you share responsibility for a loved-on whose mind and/or body is falling apart, you will wish that today you had started to learn about this material.

In 2022, the current state-of-the-art is the book Being Mortal:  Medicine and What Matters in the End by Dr Atul Gawande.

This book is about our struggle to cope with the constraints of human biology.
Where our current medical power to control human biology is finite.

This article is basically my notes from this book.

[ Notes from me alone appear in spaced-out, bold square brackets. ]

[ This book seems to be the opposite of the poem:
  Do not go gentle into that good night,
  Old age should burn and rave at close of day;
  Rage, rage against the dying of the light.
  …
      — "Do not go gentle into that good night" by Dylan Thomas.  ]

[ Or maybe this book is a compromise effort — an effort to:
  Do what we can,
  with what we have,
  where we are.
    — Teddy Roosevelt, 26th President of the 🇺🇸 USA, slightly reworded by me. ]

Perhaps someday, there will be better materials.  But today, this is what I know:

• A great introduction is PBS program Frontline season 2015 episode 6  ▶︎  "Being Mortal."   For full effect, select the video link, then icons ⤢ fullscreen, ㏄ captions=On, and ▶︎ Play.
  
  
• For the full treatment, read or 👂︎ listen to the book.  Being Mortal:  Medicine and What Matters in the End by Dr Atul Gawande.
• From my local library network website, I requested the 2014 edition be sent ("reserved") to my local branch for pickup, both:
   ◦  On 📚︎ paper.  A very popular book, but I found this almost impossible to read.  Emotionally impossible?
   ◦  On CDs in 🔊︎ audio.  I ripped them onto my computer, and copied to a flash-drive for our car.  I found this easier to listen to that to read.  Not easy;  barely possible.  If you are a for a copy.
  
  
• [ TODO:  Listen to podcast All There Is with Anderson Cooper.  ]
  
  
• Perhaps start some conversations with people you know.  Starting too early is way better than starting too late.

Relationships with anyone

Really 👂︎ listen to people:

• Sit facing your patient [ /customer/student ], with 👀︎ your eyes on their eye-level, directly in front of them.
• [ Set down 📱︎ your phone, and ] turn your seat away from 💻︎ your computer.
• Listen to your person.
• In America's Midwest, wait a second after people finish before you talk, to ensure they are truly finished.

People's desires …

Socioemotional selectivity theory:

• Young healthy stable people:
   ◦  Focus on long-term achievement, creativity, or potential new friendships.
• Old, ill, and people about to-move:
   ◦  Narrow their focus to here and now – the people and experiences near us.

Terminally-ill people want to:

• Avoid pain and suffering.
  [ Keep in mind the Peak-End Rule of remembering pain and joy. ]
• Strengthen relationships with family and friends.
• Be mentally aware.
• Not be a burden on others.
• Achieve a sense that their life is complete.
• Being happy.

Thus, we attempted to create care systems that lets people do this …

… until the closing phase of life.

Remember the narrowing focus, to here and now – the people and experiences near us.

A mounting series of crises, from which medicine can offer only temporary rescue.

• ODTAA One Damn Thing After Another.

[ With 📱︎☎ 911 , or ] in the 🏥︎ ER/ED or hospital, you may lose all control over your care:

• Terminally-ill cancer patients who had been:
   ◦  shocked/​defibrillated or given chest compressions,
   ◦  put on mechanical ventilator, or
   ◦  admitted near-death to ICU,
  had ⚠︎ substantially-worse quality-of life in their 📅︎ last week of life.
  
  
• And 📅︎ six months after death, their caregivers were ⚠︎ much more likely to suffer major depression.

Review sections on Hospice treatment priorities ↑ above, and Lessons learned ↓ below.

[ If it applies, review the Dementia Road Map:  A Guide for Family and Care Partners. 

For full effect, select the video image ↗ above or to right, then icons YouTube (if present), ⏯︎⊠ Skip Ads (if present), ⛶ fullscreen, and ▶︎ Play.  ]

… from other sources

[ We are all only temporarily-abled.

    — Source unknown, I heard it a long time ago.  Although on 2018-10-02, I heard Dr. Siddhartha Mukherjee say that ⚕︎ doctors understand very well that they will soon be on the other side of the exam table. ]

[ Design everything for your future self:
 ◦  Build your websites with text large-enough, contrast high-enough, and all that accessibility stuff.
 ◦  Design/​acquire/​modify your 🏠︎ home with your ♿ future abilities and limitations in mind.
 ◦  Etc. ]

[ Do not fear the ▦ mediset, which I prefer to call a pill-sorter.  Commonly called a pill organizer.   Starting too early is way better than starting too late:

• Useful whenever you are taking multiple prescription ℞ and/or non-prescription (OTC) drugs or supplements, especially if you take some in the morning and some at night.
• In my pill-sorter, I combine both ℞ and 💊︎ non-prescription items.  (Other people keep theirs separate.)
  In fact, most of my pills are non-prescription:  vitamin-D (family history), Zyrtec (allergy), and such.
• But they might be important enough, or numerous enough, to be worth filling a pill-sorter periodically, versus pulling a handful of bottles out of the cabinet each day, risking not taking everything everyday.
• My old set had 28 colorful little hockey pucks (1 hockey puck/day), four each labelled "MON TUE WED THU FRI SAT SUN" and containing two chambers (themselves labelled "☀︎" and "🌙︎"), all fitting in a 28-day carrier tray.
   ◦  Works well.  But I later saw something I like better …
• My new set has 32 colorful big popsicle sticks (1 stick/day) about the size of an adult thumb, each labelled "1 2 3 4 … 31 😊︎" and containing two chambers (themselves labelled "AM" and "PM"), all fitting in a 32-day carrier tray.
  Advantages:
   ◦  More compact.
   ◦  Your pill-sorting process stays in phase if you receive refills every 30 days.
   ◦  More clarity, making it harder to make mistakes, if/when you start or end taking a prescription in the middle of a cycle, between pill-sorts.
• With either kit, you can fill it periodically, leave the carrier tray in a drawer, putting out just one daily puck/stick somewhere noticeable — perhaps by your toothbrush or coffeepot, or in your breakfast-dinner-making area.
   ◦  As you finish each daily puck/stick, replace it in its tray, and retrieve the next one for tomorrow.
   ◦  Improves taking-your-pills compliance!
   ◦  The filling process serves as another reminder of when to order refills.
• Other sets come with 1 or 4 chamber per day.  (Currently, 2 chambers/day works for me.)
• Get whatever kit works for you and your situation.  ]

[ Do not fear the walker, uh, upright walker, uh, rollator, and now, the upright rollator.  They are terrific.  Starting too early is way better than starting too late:

• They prevent falls!
   ◦  A relative uses a rollator not so much for physical support, but to keep upright and prevent falls — his or her eyes have declined a lot.  For single-room walks, and often next-room jaunts, this relative bypasses the rollator.  But for longer jaunts, or if carrying a package down the hall, other floors, etc., this relative always goes with the rollator.
• Old-time walkers — the kind with four posts with rubber covers on the bottom — are sometimes called an "upright walker."  Which is a terrible name, as we will see below.
• Forget the walker.  Rollators are much better — with four large wheels, two with brakes, controlled by hand-levers with three positions:
   ◦  (up)       brakes on temporarily — I want to stop now;
   ◦  (center) brakes off — I want to roll now;  and
   ◦  (down)  brakes set on and staying on, until later released.  Nice!
• Besides, they usually have a shopping basket or bag that holds what you need:  the package you just picked up, and your every-day carry EDC:  wallet, sweater, sunglasses, flashlight, magnifier, whatever.
   ◦  Often has a padded platform that can be used as a seat — if you get tired, just set the brakes, turn around, and sit down!
• The rollator above works great.  But after seeing a new design in use, I greatly prefer this new design.
   ◦  Generically called an upright rollator;  the brand I saw was UPWalker.
   ◦  You keep your spine vertical (no slouching over), and your keep your wrist at a natural angle (not tilted over).
   ◦  When I need a rollator, I will have my eye on an UPWalker, classic model, Large frame, with cupholder.  Or whatever the next new thing is then.
   ◦  For full effect, select the video image ↗ above or to right, then icons YouTube (if present), ⏯︎⊠ Skip Ads (if present), ㏄ captions (if you wish), ⛶ fullscreen, and ▶︎ Play.
• Short of this, look into trekking poles, such as the Urban Poling series Activator.  ]
  

[ Search carefully for 3-Stage Retirement Villages 3SRV/​CCRC/​LPC/​LPRC/​LTCF.   TODO:  write this section. ]

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