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This page is about caring for our parents, ourselves, or others as we encounter difficulties, or progress toward the end of life. For those starting bits of medical trouble. For caring for children, please see sister-pages on parenting 🚼︎🚸︎ babies, toddlers, and preschool and primary school kids, and parenting 🚸︎🚶︎ tweens, teens, and young adults.
For those starting bits of medical trouble.
For caring for children, please see sister-pages on parenting 🚼︎🚸︎ babies, toddlers, and preschool and primary school kids, and parenting 🚸︎🚶︎ tweens, teens, and young adults.
Introduction Terminology
Relationships with … … anyone … ⚕︎ doctors
People's desires and focus … … caused us to create Care Systems … … until the closing phase of life.
Lessons Learned : 🩸 blood pressure meter, 💊︎▦ pill-organizer-planner-sorter, upright rollator.
Important statistics
Someday, when you become responsible (or share responsibility) for a 👪︎ loved-one whose mind or body is falling apart, you will wish that three years before, you had started to learn about this material.
Or perhaps that person whose mind or body is falling apart might be you.
If you think something like that might happen three years in the future, perhaps you should start thinking of it now. (Yes, it is tough. That is why you have to start so early. But having through it through ahead of time, makes it sooo much easier when the time comes. Even when it is yourself that is in the hospital!)
In 2023-24, 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.
My notes from this book appear in text boxes like this.
Notes from other sources or me appear:
… [ in spaced-out bold square brackets, like this. ]
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. … — Dylan Thomas, in poem "Do not go gentle into that good night."
Or maybe this book is a compromise effort — an effort to:
Do what you can, with what you have, where you 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:
For the full treatment, read or 👂︎ listen to the book. Being Mortal: Medicine and What Matters in the End by Dr Atul Gawande.
Perhaps start some conversations with people you know. Starting too early is way better than starting too late.
If you don't know where you're going, any road will take you there. — George Harrison.
Activities of Daily Living ADL Instrumental Activities of Daily Living IADL
Social Determinants of Health SDoH
🛏🪑 Get in and out of bed or a chair without help. [1] 🚻︎ 🚽︎ Use the toilet by yourself. 🛀︎🚿︎ Take a bath or shower without help. [1] 🪒🪮🪥 Shave, comb your hair, and brush your teeth on your own. 👕︎ Dress and undress without help. [1] 🍽 Feed yourself without help.
Seems to not include 🚼︎ babies nor toddlers.
📱︎☎ Use the phone, including answering and making calls. 📅︎ 🛒︎ Shop for groceries on your own. [1] 📅︎🍳︎🍲︎🍽 Plan, heat, and serve your own meals. [1] 💊︎▦ 📅︎☎ Manage your medicines, including refilling them when needed, and taking them correctly. [1] 🧹 Clean your house or apartment. [1] 🚗︎ 🚉︎ Get around on your own, by car, taxi or public transportation. [1] 💳︎ ✍ Manage money and pay bills. [1]
🚶︎ Seems to include most adults. 🚸︎🚶︎ Tweens, teens, and young adults are picking up these skills.
Plus, see socioemotional selection theory SST.
[1] If you provide any of the services above for someone else, you are a caregiver / carer:
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.
Relationships between ⚕︎ doctors and patients follow one of several models: Doctor Paternalistic (Priestly / Parental / Commander / Doctor-Knows-Best) model: • The original model. • Makes decisions for the patient. • Tells patient only what they need to know. • Works well only for unconscious patients with no family member available, and for vulnerable patients — frail, poor, elderly, and anyone who tends to do what they are told. • For reasonably-intelligent, reasonably-educated, reasonably-connected patients, we eventually invented … Doctor Informative (Scientific / Engineering / Technician / Consumer) model: • The doctor tells the patient facts and figures; the patient decides everything. • Can work well if (A) choices are clear, (B) tradeoffs are straightforward, and (C) the patient is informed and has clear preferences. • But patients want more than information and control — we also want guidance. So we eventually invented … Doctor Interpretive (Shared-Decision-Making / Counselor / Contractor) model: • Ask: ◦ "What is most important to you?" and ◦ "What are your worries?" • Then: ◦ tell patient what you know, and ◦ guide them as to which options will best reach their goals. To do this, if you are position of expertise, and need someone to talk about an uncomfortable (but important) topic: • Say "I am worried." ◦ Pause. Pause. Then say what you are worried about. • Ask. Tell. Ask. ◦ Ask the patient "What do you want to know?" ◦ Tell the other what you know of the subject. ◦ Ask the patient "What is your understanding of that?" • What are your biggest fears and concerns? • What goals are most important to you? • What tradeoffs are you willing to make? • What tradeoffs are you not willing to make?
Plus, expanding on Dr Gawande's discussion, with the info in Four Models of the Physician-Patient Relationship and The Four Models of the Physician-Patient Relationship. …
Questions may come from fear — answer them. Find out wherefrom comes that fear, or what it is that they really want, and deal with that. The job of ⚕︎ doctors is to enable wellbeing. Wellbeing is about whatever reasons that person wishes to be alive, at whatever stage of life that person happens to be, at that time. What is your understanding of your current situation? What are your fears? ◦ Hopes? Tradeoffs you are willing to make? ◦ Not willing to make? Based on that understanding, what shall we do now?
The job of ⚕︎ doctors is to enable wellbeing. Wellbeing is about whatever reasons that person wishes to be alive, at whatever stage of life that person happens to be, at that time.
According to socioemotional selectivity theory SST … Young healthy stable people focus on: long-term achievement, creativity, or potential new friendships. People who are old, ill, or about to-move: narrow their focus to the 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. Be happy. Thus, we attempted to create care systems consistent with this …
Standard medical care treatment priority: Extend life. Sacrifice the quality of your existence now (e.g., with surgery, chemotherapy, or ICU ), for the chance of gaining 📅︎ good-quality time later.
This seems best for young, healthy, stable people, including those with medical issues that can be fixed.
Hospice treatment priority: Help someone with a fatal illness to have the fullest possible life right now. In terminal illness, that means focusing on: Freedom from pain and discomfort. Keep in mind the Peak-End Rule of remembering pain and joy. Maintain mental awareness. Getting out with family as practical. Being happy. The job of any ⚕︎ doctor [ or 3-Stage Retirement Village 3SRV / CCRC / LPC / LPRC / LTCF ] is to: Support quality of life: As much freedom from ravages of disease as possible. Retention of enough function for active engagement in the world. Three Plagues of Nursing Home Existence: Boredom. Loneliness. Helplessness. Let's try to fix that. Bring in life: green plants in every room, garden, animals. Eating alone is not very stimulating. The chance to shape one's story is essential to sustaining meaning in life.
For all 💉︎📅︎ 🇺🇸 vaccines applicable to you, make an appointment to protect you against ⚰💥︎🏥︎ severe disease.
Healthy aging, from ISB.
Links to state and national aging organizations.
Good but difficult article on why we age "Selectively advantageous instability in biotic and pre-biotic systems and implications for evolution and aging." Frontiers in Aging. 16 May 2024. DOI: 10.3389/fragi.2024.1376060 Accessed 2024-05-26.
⚰ All-cause mortality and ⚕︎ long-term health are predicted much more accurately by cardiorespiratory fitness (CRF) than by body-mass index (BMI). [5] DOI: 10.1136/bjsports-2024-108748
If it applies, review the Dementia Road Map: A Guide for Family and Care Partners.
Remember the narrowing of focus, to the here and now — the people and experiences near us. Eventually, aging or disease progress to: A mounting series of crises, from which medicine can offer only temporary rescue. Sometimes known as … One Damn Thing After Another ODTAA. Consider that you may lose all control over your care:
in the 🚑︎ Emergency Room/Department; or in the 🏥︎ hospital. Specifically: ⚠︎ Terminally-ill cancer patients who had been: ◦ ⚡︎ shocked/defibrillated or given chest compressions, ◦ 💨︎⚙︎ put on a mechanical ventilator, or ◦ admitted near-death to ICU, had ⚠︎ substantially-worse quality-of life in their 📅︎ last week of life. 📅︎ Six months after death, their caregivers (!) were much more likely to ⚠︎🧠 suffer major depression. (Although caregivers/carers often die before their care recipient. [citation needed] ) Review sections on hospice treatment priorities ↑ above, and Lessons Learned ↓ below.
Specifically:
Review sections on hospice treatment priorities ↑ above, and Lessons Learned ↓ below.
Cognition is much worse if indoor temperatures are not controlled to 20–24°C (68–75°F). [6]
"Hospice nurse shares clue she uses to know if someone is dying 6 [3, 1] months before it happens."
There are now such things as death plans, and people called death doulas, to help you and your family through that process. You might look into them.
For full effect, select the video image ↗ above or to right, then icons YouTube (if present), ⏯︎ ⊠ Skip Ads (if present), ⛶ fullscreen, and ▶︎ Play.
Do not fear the 🩸 blood pressure meter, 💊︎▦ pill-organizer-planner-sorter, upright rollator.
Learn all you can from local sources of health information (our local PBS station has a great local program on that), and academia.
If you are over 65 years old, or care for one, periodically (every 3 years?), check your meds against Beers Criteria, and bring any matches to the attention of your care team.
📅︎ Way ahead of time, we should: Create a good: • Durable Power of Attorney PoA for Health Care DPoAH; perhaps via Caring Info > your state, and a healthcare provider > link Download our DPOAH form. • Do Not Resuscitate DNR [ , Do Not Attempt Resuscitation DNAR, Allow Natural Death AND, or 🇬🇧 🇨🇳 🇰🇵 🇰🇷 🇷🇺 🇪🇸 🇺🇦 🇻🇳 POLST. ] • Other written advance directives for healthcare based on input from the subject and any advisors and stakeholders (spouse, ⚕︎ doctor, 🚸︎ kids, etc.), and perhaps tailored by jurisdiction. Links to these and more, for Michigan. • Maybe the healthcare info in my insurance company's caregiver info > Care Organizer. • [ Your death plan (if you have one). • Contact information for your death doula (if you have one). ] Store: • at your main 🏥︎ healthcare provider, • at your most-likely 🏥︎ hospital, • [ on the door of your refrigerator, in a Vial of Life (via a form filler > Start), and • in your magic 2-cm (1-inch) binder or folder, that contains all documents your team might need in your time of need. ]
Ensure that 👪︎ any relatives likely to be there near the end: • have these documents (both sets), • know where you keep the original master copies, • have read them, and • are mentally prepared to follow through on these wishes.
We are all 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: In all things, apply principles of Universal Design, including Design for All, barrier-free, and adaptive technologies. Including: • Design/acquire/modify your 🏠︎ home with your ♿ future abilities and limitations in mind. • 🚧 Build your 🌄︎ presentations and websites with text large-enough, contrast high-enough, and all that accessibility stuff. Test what you've done!
There are four types of anesthesia: Local — numbing a small area, such as a dentist numbing a tooth before working on it. Regional — numbing a large area, such as an epidural for the pain of childbirth. Sedation — somewhat-suppressing the central nervous system, while still letting the patient follow verbal instructions, such as for colonoscopies or removal of wisdom teeth. General — greatly-suppressing central nervous system activity, causing unconsciousness and total lack of sensation, for invasive procedures such as surgery.
If your region has a PACE program, check into it. Part of Medicaid. But instead of running a 24/7/365 skilled nursing home, they try to keep you in your home, for as long as practical. They provide some services at home. But most services are supplied through a sort of day camp: one site per country (or so), Monday-Friday 8am-4pm, hang out with your buddies playing cards or whatever, breakfast, lunch and a snack, bathing services??? If you are a caregiver/carer, this could be just the sort of respite care you need to maintain your sanity. Gotta check into this. I hear many of their clients are very satisfied, and 95% of clients stay home until they die. If your area does not have a PACE program …
🇺🇸 In the USA, you can use data from Medicare.gov to find a good ⚕︎ doctor, 🏥︎ hospital, nursing home※, rehab, home services, supplies, equipment, etc. > your need > your location > set Sort by to Overall Rating, if possible > look for good overall and patient satisfaction ratings; or 📱︎☎ 1-800-MEDICARE. 🇺🇸 In the USA, you can use data from US News and World Reports to find a good ⚕︎ doctor, 🏥︎ hospital, senior living※, Medicare Advantage company, drug, treatment, or diet > your need > your location > set Sort By to Ranking, if possible > scorecard, outcomes, etc. ※ = Search carefully for 3-Stage Retirement Villages 3SRV / CCRC / LPC / LPRC / LTCF. TODO: write this section. BTW, even if you or your 👪︎ loved-one is in one of these facilities, y'all need to work out who is going to: • 🍳︎🧹🛀︎ cook, clean, bathe, etc.; • 📅︎ 🚗︎⚕︎ maintain a calendar, take to doctors appointments, etc.; • 🍲︎ 💊︎ give food and medications; • 🍲︎ maintain a food supply in fridge; • 💊︎▦ set up a pill-organizer-planner-sorter, and keep a steady supply of refills; • 🔊︎👂︎ verify, clean and replace parts in hearing aids; • 💪︎🧠👥︎ see to exercise, brain, and social needs; and • handle all the other Instrumental Activities of Daily Living IADL.
After using my US$43 (€40) Costco blood pressure cuff for some months, I found …
If you want to measure your real blood pressure:
If you want to screw up your blood pressure reading (probably make it read artificially-high):
[7] According to my findings using my US$43 (€40) Costco blood pressure cuff for some months. My doctor told me to get one. If you get one, validate it!
[8] "Commonly used arm positions can substantially overestimate blood pressure readings, study finds." Johns Hopkins School of Medicine. October 7, 2024.
[9] "Your doctor's office could be reading your blood pressure all wrong." Beth Mole. October 8, 2024.
[10] "Home Blood Pressure Monitoring." American Heart Association.
[11] Blood Pressure Measurement Instructions. American Heart Association. Validate it!
I heard medical professionals call it a 💊︎▦ mediset, but pill-sorter, pill-organizer or pill-planner are more specific, and Search Engines say are more commonly-used. I prefer pill-sorter.
Regardless, starting to use one too early is way better than starting too late:
Do not fear the walker, uh, upright walker, uh, rollator, and now, the upright rollator. They are terrific. Starting to use one too early is way better than starting too late:
They prevent falls!
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:
Besides, rollators 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.
And rollators often have 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 shown in the video ↘ below or to right.
Short of this, look into trekking poles, such as the Urban Poling series Activator.
63% of doctors overestimate future survival time. By an average of 530%! 17% of doctors underestimate future survival time. Risk factors for falling (and breaking your hip): Poor balance. Taking more than 💊︎💊︎💊︎💊︎ four prescriptions ℞. Muscle weakness. None of these: 12% (⅛) chance of falling, in a year. All three: almost 100% chance of falling, in a year.
17% of doctors underestimate future survival time.
Risk factors for falling (and breaking your hip):
43% of caregivers/carers are men — about 3:4 men:women — close to gender-parity. This is not just a women's issue!
Caregivers/carers often die before their care recipient. [citation needed.]
If you have any of these issues — or even if you don't:
Cancer costs are U-shaped: High initial costs. [ For example, in the patient's first year with the condition, to get worked up, diagnosed, do patient education, decide upon and start a treatment plan compatible with patient, etc. ] [ OK. ] Reasonable maintenance costs. If treatment works, costs taper to US$2000 (€1900) / year. [ Excellent. ] Final year of life costs average US$94 000 (€88 000) / year. [ Pre-COVID! ] [ May be useless or less-than-useless. ] 25% of Medicare spending is for 5% of patients, in their final year of life. Most of that goes to final few months of life, where it gives little apparent benefit. Or negative benefit. More than half of those living in 3-Stage Retirement Villages 3SRV / CCRC / LPC / LPRC / LTCF run through their savings.
25% of Medicare spending is for 5% of patients, in their final year of life.
More than half of those living in 3-Stage Retirement Villages 3SRV / CCRC / LPC / LPRC / LTCF run through their savings.
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--Eric Piehl comments on web care.html v1.0.9.2 2025-02-02, copyright © 2022–2025 by Eric Piehl.