guide to the end

(2019) by bj miller @bjmillermd and Shoshana Berger @shoshanaberger

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notes/quotes:

intro

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there is nothing wrong w you for dying.. but you’d never know it from the way we talk about death.. we actually call it a failure: her health is failing. he failed treatments.. if you believe what you read, the entire enterprise of aging is optional.. if we can’t beat death, then clearly our character or will or faith isn’t strong enough..

next to birth, death is one of our most profound experiences – wouldn’t we talk about it, prep for it, use what it can teach us about how to live..

holding on. letting go. there will be lots of both

we believe this book will help dying be less painful and more meaningful

only a small fraction of us, 10-20% will die w/o warning..

the rest of us will have time to get to know what’s going to end our lives.. as discomfiting as that can be, it does afford us time to live w this knowledge, get used to it, and respond. we do have some choice about how we orient ourselves toward the inevitable..where we’ll die, maybe. around whom. and, most important, how to spend time meanwhile

to make those choices manifest, you’ll need to be clear about your ‘goals of care’.. a phrase borrowed from field of palliative care

palliative care

your goals of care follow from answers to: what’s most important to you now.. what can you live w/o. how much treatment do you want and what kind.. where do you want to be when you did.. how do you hope to be remembered..

regrets

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wishes also need to square w practical realities of your situation.. including logistics and costs..

we’re not here to load you up w work.. we’re here to help you navigate the work that’s coming..

the vast majority of you will bump up against he health care system at some point, and it will likely have a significant impact on how you experience life w illness and your own dying process.. out system has profound weaknesses, along w its astonishing strengths, and moving thru it can be counterintuitive and vexing experience. there are many reasons for this.. but one way or another they all spring from the fat that the health care system was designed w diseases, not people, at its core..

that’s another reason why the care part of health care must always return to you, the human at the center: you need to stake that claim and protect it

our ultimate purpose here isn’t so much to help you die as it is to free up as much life as possible until you do

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on shoshana’s story: every attempt to cure my father’s incurable disease landed him in the hospital again.. on one visit i noticed his arms/legs were bound to the bed like an animal’s.. he kept lurching forward, trying to wipe his nose.. i begged the nurse to untie him, but she said he was danger to himself.. i drove home screaming.. we urged beth.. his wife to request hospice care.. but to her that meant giving up, and in her desperation for more time.. she told the drs my father wanted to extend his life at all costs.. he’d jotted it down on a napkin somewhere.. beth finally relented and we brought dad home..

on the role reversal.. my father helped us understand the mechanics of life, how fluid and air and energy flow. but he couldn’t teach us how to give him the death he wanted..

planning ahead

1 – don’t leave a mess

clean out your attic; secrets and lies will catch up with you; say the things that matter most

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human lives are messy.. and when it coms to the end of life, our messes become more consequential.. we leave behind material and immaterial (emotional) stuff.. attending to all of it before you’re gone ensures that your survivors have the opp to focus on you and not on how long it took to clean out your condo..

cleaning up s one of the best gifs you can give loved ones.. it will save them time, money and no small amount of heartache..

important to ask self why you’re keeping all of this stuff.. is it because you still use it and it gives you pleasure? is it the memories embedded in each piece ? or is holding on a symptom of your resistance to thinking about no longer being here?

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your kids probably don’t want it.. your family doesn’t need/want most of your stuff.. people develop their own tastes.. if they do take something, it’ll be a few quirky, sentimental items.. few will go for the big stuff..

prepare yourself for the real possibility that you may not even get to the part where your kids reject your stuff, as they may not be prepared to talk about any possibility of your no longer being there.. kids say ‘i don’t care about your things’.. but after paren dies.. turns out they really do care but weren’t read’

ask family freinds from time to time if thye’ come over and do a walk thru of hour home.. tell them backstory of items important to you.. ie: round robin each chooses one thing; walk thru w masking tape..

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even if you place great financial value on things.. we don’t recommend trying to recoup it by spending endless hours finding buyers, negotiation pricing and arranging handoffs.. most antiques dealer and auction houses are very picky about what they’ll accept.. selling on ebay can be a full time job.. but a drop off at the local goodwill takes mere minutes.. and your discards can become treasures in someone else’s living room..

few things are more painful than the idea of family fighting over your estate after you’re going..

don’t have to throw out everything that doesn’t bring joy when you hold it up against your heart.. the idea here is to make the mess manageable for the people you love..

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now your emotional attic.. even if you meet resistance .. keep pushing for more conversation before you die.. make sure your relationships are in order and that you say what needs to be said to avoid regret at the end of your life.. these are the convos that determine how you’re remembered on an emotional level..

regrets ness

secrets are so common that nearly every grief counselor we spoke to has dealt w them ‘i have had encounters w adolescent children who knew that something was being kept form them.. nobody in the fam would tell them what the details were and that made it worse, because it left them to fill in the blanks’ tom umberger

assume they’ll (secrets/photos/letters) be found after.. and you won’t be there to explain – dna tests et al.. siblings, bio parents..

four things people long to hear that can help mend even long fractured relationships (ira byock): please forgive me; i forgive you; thank you; i love you.. also he would add 14 yrs after book.. i’m proud to be your parent

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but more than guidance for what to say, really love those you love, seek forgiveness sin earnest and if you can, take time to release those around you to live on.. the rest will follow

though your pain may die w you.. the pain you’ve caused in others won’t..

lighten your load so you can be more present for the rest of your life

2 – leave a mark

bequeathing money; capturing your story; writing an ethical will; leaving a letter

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the things that fill your days – what you read, cook, wear, and collect – carry your story and are worthy of being handed down.. what will be important to others is that it was important to you

section on ways to leave money

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suggestions for recording stories: storycorps; make a family tree; record question/answers; ..

leave a letter.. ‘what would you want to say to your daughter if you can’t tell her in person’.. or talk to someone and have them write it up

it will always be too soon to tell your story ad let people know how much they mean to you, until it’s too late

the question you’re answering: what do i want to make sure they know.. then.. give it to them now; give it to someone to give to them; store it with your will

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on an ethical will – transferring your life lessons/value.. and/or why you’re leaving certain things to certain people et al.. baines found that 77% felt emotional well being improved and 85% felt physical well being improved after completing and ethical will.. they reported having deeper connection w loved ones, felt more positive about themselves and felt they had ‘more purpose in their life’.. can be as simple as collecting quotes you like or journal entries..

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some of he people we’ve met who left the most profound legacies had nothing to their names but a deep well of kindness that they and others drew from

3 – yes, there’s paperwork

how to prep a will and trust; what to put into your ‘wen i die’ file; choose someone to manage your heal care and finances

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death has its own paperwork

utopia of rules, fuller too much law et al

the paperwork that helps you define what you want at the end of life: 1\ advance directive 2\ durable power of attorney for finances 3\ will 4\ revocable living trust

all of these forms are meant to document important conversations.. shouldn’t replace those convos.. people who will be able to speak for you in ways no boilerplate form ever could.. which can change over time..

advance directive: who will make med decisions for you if you can’t.. and/or will follow directives you gave them – good to do this when you turn 18 .. organ donor; life support; et al

21 people in us die per day waiting for an organ

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what to put into your ‘when i die’ file

4 – can i afford to die?

the costs at the end of life; what happens to debt; long term care insurance and medicaid

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long term care insurance – because more need it today.. industry is underwriting policies w more restrictions at higher cost.. ie: 1\ kicks in only once you lose ability to complete 2 or more of 6 activities: eating; bathing; dressing; getting to/from bathroom; continence; walking by self.. need professional to sign off on that 2\ if woman w/osteoporosis, man w a cane .. dementia.. can be denied based on pre existing condition 3\ most now cover only 2-3 yrs.. used to last life time

can i rely on medicaid – short answer.. yes.. most people are able to count on medicaid – as of this writing.. the common misperception is that you need to be completely bankrupt to be eligible.. you don’t.. can’t have more than $2000 in bank.. can have auto and home and still qualify

lots of people game medicaid so have more to give to family when they die.. so medicaid has a 5 yr lookback.. ie: assets less than $2000 for at least 5 yrs.. no govt support after long term ins plan ran out.. et al..

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according to one recent study 73% of american will die in some kind of debt.. fed trade commission has rules to ensure your family doesn’t have to pay your debts.. but your estate will.. so money/assets you thought would go to heirs will be combed thru and used to pay any outstanding bills.. unless..relative cosigned anything like a loan or a credit card.. they will be accountable for your debts..

some discrepancies.. ie: in a filial responsibility state: adult children may be required to pay for deceased parent’s unpaid med debts.. hospitals or nursing homes.. when the estate cannot (don’t see co listed)

each circumstance is diff .. so do some hw or enlist a lawyer or a med billing patient advocate to help you

add end of life costs to your retirement plan

dealing w illness

5 – i’m sick

getting the news; communicating w drs about prognosis; how to deal w shock of it all

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moving from healthy to sick is a process. first comes diagnosis; then, ,at some point, the news that it’s not curable or the realization that you’re *not interested in trying to cure it anymore

*yeah that.. how to deal with that when it’s just mobility and mind.. (not cancer) .. 20 min a day proven (with her trying it for 30 days) to change mind/mobility drastically..

even if your dr (or fam) does her part, your brain might twist things around to protect you from a truth it’s not ready for

6 – taking stock

questions to ask yourself: what’s my situation? what’s important to me now

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1\ what have i been doing w myself? knowing this will help dr determine parts of your routine that should be nurtured and what should be dialed down

2\ what do i find myself thinking about most? your mind is trying to tell you something.. ease your burden wherever possible to free up time/space

3\ when and where during my day do i feel best/worst? what to avoid/seek

4\ how has my mood been? – angry/sad/giddy.. asking is an invitation to let it out

5\ what am i most proud of? what do i like about myself? – what do i want to become.. something i’d like to change?

6\ have i ever lost someone close to me? the past will color your choices (of how you want to die).. make the confusion clear

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what’s most important to you now:

1/ which is first priority: amount or quality of time left (11 questions in all.. most have to do more specific to ie: cancer diagnosis)

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at your best.. your favorite.. who are you – (randy said.. wanted everyone to know how much he loved them.. so moved to house surrounded by fam/friends.. to fell/show his love.. to soak it all up – in his final days..

hers: piano.. but she always finds excuses not to play.. what’s that?

simple pleasures: music, a bit of nature, puzzles, something sweet

you may think the end of life is a time for grandiose moments, but the things that make us love life are often very small..

make a chart: my situation.. my goals.. trade offs.. next steps

7 – now what

prognosis and the flow of info; major chronic diseases and their patterns; working w dr; navigating treatment decisions; saying no

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our med system is wired to extend life – as defined by the presence of a heartbeat – whenever possible, no matter how uncomfortable the means..

the med system isn’t i the business of telling you what sort of life is worth living; that’s your call.. just because you can do something doesn’t mean you should

on patients not going with their gut.. ie: die comfortably at home or go travel.. because it smacked of quitting.. in truth.. saying no to treatment can be a courageous act..that frees up time and energy for all sorts of meaningful moments that might otherwise be spent distracted in cha chemo room, er, icu

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what drs wish you knew: a primary care dr is invaluable; don’t know who to talk to in the room w fam/friends; the internet is wrong much of the time; they rely on colleagues.. ask a nurse your questions.. rather than wait for dr; health care system is messy and unintuitive; they get tired too

dr needs to know what’s not making sense to you.. so ask questions.. hiding true needs from dr only makes it harder for you to get dr’s help

patients wish dr’s know: they have busy/complex lives.. diff goals from dr.. want dr’s to be honest and open of other ways of thinking.. to use straight forward language..

8 – coping

dread and other complex emotions; coping techniques; 13 constructive approaches to try

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one way or another, mortal fear becomes connected to the fear of not living your life while you have it.. new limitations can bring into focus what is still possible

#1 regret of the dying – didn’t live life true to self – fittingness et al

modern med tends to treat fear as depression.. and send you home w a prescription for prozac or valium.. but mortal fear is diff: it has nothing to do w mental illness and is a vital force that shouldn’t simply be snuffed out.. there is important stuff wrapped up in this fear; namely, the search for meaning, one of the greatest compulsions of all.. who am i.. what am i doing.. does my life mean anything.. get closer

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denial gets a bad rap.. but actually a useful coping mech.. left unchecked however.. denial gets in the way, barricading you from the full spectrum of your own life

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we grieve all sorts o flosses, not just the loss of life: loss of freedom, independence, roles, things, ideas, relationships, and bodily functions..

in hospice work you get used to unprocessed grief popping up all over.. we see it in families finding fault w things over which they have some control instead of directing their anger at the disease (which is less satisfying to complain about).. or requesting more voices in the mix until they hear the news they seek.. we see it in patients yelling at staff for no particular reason.. weird mood swings.. et al

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pamela and john were fortunate to be able to work thru their grief together.. by the time of john’s death it was familiar companion and pamela was able to enter her official mourning w nothing but warm, deep sadness.. we called it ‘clean sorrow’..

grief, denial, fear: at root, they all have to do w longing.. missing someone/thing, fearing whatever might remove you from them, and rejecting the idea that you’ll ever be apart are all expression of appreciation.. realizing this link is helpful: it contextualize the pain an sets us up to feel grateful to have ever had that health or ability or relationship in the first place..

seeing thru them (harder feelings) to the love of life that is their source..

13 ways to cope: set goals (people seem to be able to will themselves to the end they need.. inspiration/purpose); feel the good stuff (take your breaks where you find them.. rather than thinking if i fell good.. i’ll have even more disappointment..you’ll fall anyway and good stuff brings resilience); pray (connect beyond death); be grateful (take life in); accept (don’t blame, hide fear, feel like a victim.. don’t lose your wonder, curiosity, joy, crying .. roll w every emotion..see things for what they are.. helpful for fam in not having to dance around subject); love (give/receive.. immense but often shows up in subtle/unexpected ways); relate (ie: named her cancer gus.. cheering him up when tumors shrink and scolding him when they grow.. being with disease but more than disease); be (when mindful.. you watch thoughts as they come/go .. not clinging to them – more aware less agitated); see differently (ie: med marijuana, psilocybin/shrooms, ecstasy, lsd – other ways to see self so don’t feel need to escape.. new lines of sight); pinch yourself (pay attention to your senses); create (improv/invent as come upon hurdles.. ways to explore what you don’t understand); laugh (a tool for putting dread in its place – the joke is only on us if we don’t find some way to laugh); call a truce (he’d made fear something of a companion, which defanged it.. more familiar so less scary.. )

9 – breaking the news

how to tell others; dealing w people’s reactions; posting on sm

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try to hear beyond what people are saying to what they are trying to convey.. intentions are more important than execution. often you know in your heart what someone is trying to get across, despite their fumbling; the fumbling and nervousness usually point to how much they care. hear that..

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the best way to show you care for someone is to care for them.. sit/listen may be all they really need

holding a little silence, even a few seconds, can be transformative.. silence conveys all sorts of kindness that words cannot.. and it also allows room for deeper emotions..

keep a narrow view when asking questions.. ie: how do you feel today, this morning.. rather than in general

there’s no need for convo.. physical presence can be comforting in and of itself..

don’t try confuse your feelings w theirs.. don’t try to sound profound.. pity – unhelpful – humiliating

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if some people become overbearing, beloved though they may be, it’s perfectly find to hang up a virtual ‘do not disturb’ sing, sending an automated response that you need downtime and are off limits until you say differently (this was sm specific)

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so much of the roller coater of living/dying is tied up in communication – or its absence.. do your best to acknowledge what’s going on , for yourself and everyone involved.. simone weil ‘attention is the purest and rarest form of generosity’.. no matter what words are spoken, being there is the real balm

shaw communication law; lanier beyond words law; et al

10 – love, sex, and relationships

relationships in flux; guilt, anger, and other unpleasantries; choosing to stay together or not; what is sex now?; don’t forget your senses; connect while/where you can

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the goal is to fell that you are seen. that you are ok as you are.. listen w/o judgment.. drop your defensive armor. vent. spare the ultimatums..

intimacy comes in all forms (ie: guy who takes pics)

help along the way

11 – dynamic duo: hospice and palliative care

what they are; how/where you get them; when to get which; how they differ/overlap

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hospice is a kind of palliative care but designed explicitly for the last stages of life (6 mos or less) and at home.. so replacing cure w comfort..

in general, people wait too long to enlist via lack of info..

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82 – law – medicare hospice benefit.. signs you off any other ins.. even if not yet 65 (age to get medicare)

too often people wait too long and so don’t receive all its benefits

in 2014 45% of americans (1.7 m) who died did so on hospice.. but avg time spent was just over 2 mos.. half for only 18 days.. 1/3 for a week or less.. for some.. that’s fine.. but more commonly it just means people are suffering more than they need to

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to qualify: 1\ some disease/illness/condition that cannot be cured or that you are not interested in treating but that will.. result in death .. (doesn’t have to be cancer) 2\ dr stating you will most likely die w/in 6 mos…

no uncommon to recert and remain on hospice for longer than 6 mos

if get better.. hospice ends and reg health ins resumes.. and person can re enroll later.. can also just decide you don’t like it and get old ins back

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palliative care: patient and fam centered care that optimized quality of life by anticipating/preventing and treating suffering.. head your wishes.. you decide ‘suffering’ and ‘quality of life’.. no mention of death or time limits in the defn

palliative care

12 – symptoms 101

what you may feel and experience over the course of advance illness

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as w chronic illness eventually,, you’ll do yourself a favor by working w your symptoms rather than trying to flee them. much discomfort comes from resistance..

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80-90% of cancer patients are using some form of alt med but only 30% admit that to their dr

use this medication lis as a reference guid to prompt further discussion w your dr, not to self diagnose or self med

(rest of chapter is this list – not adding any here)

13 – hospital hacks

getting inside; what to pack; what to ask for to get what you need; finding your person; dealing w the icu

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80% of us say we don’t want to be hospitalized at the end of life.. but that’s not what happens.. half of medicare patients (those over 65) go to an emergency dept in their last month of life.. of those, 1/3 are admitted to icu and 1/5 have surgery..

the mad dash for life extending treatments is not a problem in and of itself. the problem is what gets lost in that process. in the frenzy of hospital visits, there’s often an escalation of treatments to the point of futility.. by then, comfort and peaceful time w loved ones are an afterthought..

hospitals carry out aggressive treatments whether you’re 20 or 90.. that’s their job.. and hospitals can’t always be avoided.. but you need to take care that their effort on your behalf is aligned w what’s important to you

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why death is not considered an emergency.. dying can’t be ‘fixed’ and hospital are places for fixing.. they are also places you might end up getting worse.. pneumonia, infection, .. which can make you stay longer at a cost to your health/wallet.. so generally a good idea to go to hospital only when there’s something it can actually help with..

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it’s amusing that hospital and hospitality (and hospice) have the same latin root: hospes, meaning ‘host’.. they’re not exactly bed and breakfasts brimming w warmth.. most hospitals are fluorescent and sterile.. bring your fav things to bring feeling of home.. to affect your experience

advocate for yourself .. but be kind.. you and staff are at each other’s mercy

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one of the problems w a hosptital is that it’s filled w detectives trained to find problems.. often enough, a blood test/scan will turn up new problems that are unrelated to what’ sailing you.. medical slang for such a finding is incidentaloma.. loosely translated as ‘a lump; found by accident’.. can be fortuitous when otherwise healthy allowing for early treatment..

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but more likely that problems that turn up on tests incidentally aren’t problems at all.. and chasing them down can do damage. this is why whole body scans and other screens fro disease aren’t always a good idea.. and for people w serious or terminal illness, it makes even less sense to go looking for new problems.. might get swept away treating things that are trifles compared to he one that’s actually killing you.. respect the power of a hospital, but use it cautiously

the icu is the hospital in concentrate.. all of med’s high tech extreme of strengths/weaknesses.. if know you’re dying soon.. icus is a place to avoid.. but if end up there.. apply same rules of thumb.. still a hospital just extreme

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most patients will remember their nurses (rn) more than anyone else; they tend to be hands on and have an amazing array of skills

14 – help .. i need somebody

how/when to hire help; home care/health; friends and fam; neighborhood networks

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on not wanting to be a burden.. hard to receive care.. but cutting off loved ones from opp to demo their love.. is a lost opp.. and don’t think that because your’e sick and less independent you’ve got nothing to give.. people can learn from you; you can brighten days w kindness/humor.. candor.. for all that you might not be able to do now.. look for what you can do

15 – care for the caregiver

what caregivers actually do; gifts/challenges of attending to someone; financial toll; hot to get a break

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on avg caregivers provide more than 20 hrs a week for four years

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when you become a caregiver you learn that you have to turn the phrase upside down: don’t just do something, sit there

you might come to see just how long the list is of things not to worry about.. pettiness.. nightly news.. traffic..

totally the opposite..

your person may be miserable no matter what you do or what anyone does.. your confidence can’t ultimately depend on how well he/she is faring or even on his/her satisfaction

or others who aren’t there in it

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your job is to get good at regrouping, no necessarily at trying harder

people caring for loved ones w long term dementia are at even higher risk for health problems, including heart disease, low immunity, poorer sleep, addictions

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the estimated value of informal, unpaid sr care provided by family members approaches $500 b in the us alone. that’s double the amount spent on formal, paid care

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don’t make the mistake of trying to hold your breath until it’s all over – pace your self/care.. distract yourself..

16 – how to talk to kids

eight common questions young ones ask and ways to answer them

when death is close

17 – it’s your body and your funeral

what do you want done w body? planning your funeral; alt options

how to choose a funeral home

or not have one

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avg cost of a ‘traditional’ american funeral is 7-10 000.. casket, plot, opening/closing grave, grave liner, headstone and its installation..

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some people bury the body on land.. in way that allows it to decompose and become fertilizer.. many natural burial sites double as nature preserves..

nearly 1/2 of all americans.. (in 2015) now choose cremation .. costs less than 1/2 .. can put ashes anywhere.. better for environ

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bio cremation.. a hot water method.. 340 degrees.. breaks body down in about 3 hrs.. as of writing.. it’s legal in colorado.. and 10 other states

cremation is not the most environ friendly choice.. that would be natural burial

you now can embed ashes in a diamond, a vinyl record, a teddy bear, a portrait, pencil lead, or stained glass, or it can be used to make the ink in a tattoo..

caskets cost 439 to 18 000.. avg is 2 000 and up

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(on unexpected guests/stories at a funeral) death has a way of brining what has long been shut away .. whether out of shame or guilt or fear.. into the light.. for the person who’s been holding those secrets, that can feel like a great relief – an unburdening.. but for those from whom the secret has been kept, it can feel as though someone just threw acid into a fresh wound

18 – can i choose to die?

physician assisted death; who qualifies; where the law falls

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no legal in : oregon, dc, vermont, montana ,california, hawaii, washington and colorado..

those in favor of it believe it offers a choice to a person who otherwise feels she has none.. cut off from meaning.. enduring a death that comes too slowly.. increasing dependency.. a relief from senseless misery

no matter which side of the debate people fall on.. most agrde that our health care system, our political system, and our society are not doing all that they can to help people suffer less.. where is the outrage at that fact..

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roughly 1/3 of people who receive the lethal prescription never use it.. knowing they had options was enough.. knowing they have a way out in case they come to need it

a very small fraction of people who die each year in the us die by choosing lethal prescription.. in oregon, where it has been legal for 20 yrs.. only .4 percent of deaths.. so.. law affects very few people..

the issue is loaded and complicated.. (ie: one guy told his fam and they were supportive.. then he changed his mind and he could hear their shades of regret.. the idea had grown on them.. they worry about money.. et al..).. but we should never feel as though we can’t change our mind

find the bravery to change your mind

requirements include: incurable/irreversible disease .. death w/in 6 mos; be able to make med decisions for self; be able to self admin med

and just because legal.. might not find dr’s willing to do it

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alts – stop eating/drinking.. in late stages of illness when appetite is low.. hunger less an issue; thirst however can be uncomfortable.. can be sedated w meds to help you sleep thru the dying process.. again.. has to be your own choice.. and that no other suitable options exist.. but don’t need physicians consent and there are no regulatory hurdles to jump thru

can be hard on survivors when people judge them after you die..

med aid is not considered suicide.. so won’t affect life ins payouts.. but vsed (starving) still considered suicide.. so life ins policies may be nullified.. w/in 2 yr period of policy purchase

not legal for those w dementia (can’t chose of sound mind)

cost is high – 600 to 4 000.. and not covered by ins

19 – final days

what active dying looks like; handling opiates; sitting by the bed; stoping life support

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active dying – the final hrs to days of bodily life – is diff from rest of life.. body is shutting down and diff rules apply now.. not a time to rush in and throw more interventions into the mix.. hospital transfers, 911 calls, new modes of life supports.. won’t help now in the way you want them to.. getting in a frenzy will only distract you from one of the most profound experiences of life.. now is a time for staying put, for slowing down and being present

most of the time people are not conscious for the active dying phase.. at least not as far as science understands consciousness..

few signs:

delirium (might say sweet or awful things) .. and the delirium comes and goes.. and can be subtle..

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in my experience, esp when there is any sign of agitation, medicating delirium is a good idea..

window of lucidity (short window of wakefulness and clarity at end)

food hurts (body smartly rejects it..symptom not cause) forcing food/fluid may do harm instead

skin mottling (veins in hands feet more pronounced.. lacelike) sign that circulation is starting to falter.. may be less obvious if have varicose veins.. hand/feet likely cold to tough

fast, faint pulse (wrist pulse first to go) pacemaker keeps on ticking nice and even.. so may want to turn it off

chaotic breathing (fast, labored, long – 20 sec or more – pauses, jaw hanging low, death rattle- gurgling – even though hard to hear – dying person not feeling discomfort.. existence of rattle tells u conscious reflex no longer functioning.. so.. not struggling for breath)

meds to help dry mouth secretion sand diminish death rattle are generally for fam/friends.. better to just reposition or turn head to side

how to tell if suffering:

fast breathing – slow breathing not hard.. but fast breathing is.. could be sign of death and/or struggle

sustained grimace – persistence is key

restlessness – fidgeting.. only if persistent

caregiver’s gut sense – if close to dying person.. you will know if something is amiss

any of these are a cue for caregiver to do something – reposition you in bed, lift/turn head, add more

blankets, take more away.. perhaps more meds

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opiates cause enormous suffering when abused.. they also bring enormous relief when used appropriately.. (for pain, shortness of breath, diarrhea).. won’t kill you or make you addicted.. get the morphine is not code for ‘kill the patient’

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like labor of birth.. some strive to stay awake/aware thru out dying process..

hearing one of lasts things to go.. but not necessarily time to censor.. people dying know they’re dying more than we do.. so might be most respectful to speak plainly in front of patient

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experience tells u that some of the most intensely attached people need to be alone for the final moment.. as though the presence of loved ones prevents them from taking that necessary step.. bear this in mind less you feel guilty for leaving your loved one alone

our best advice here is not to attempt to time the death moment and instead to take care of yourself along the way.. eat and drink and sleep and go out side now and agin.. otherwise these final hours will become an unremarkable blur.. when you step away.. just tell loved one.. perhaps w a kiss.. tell him it’s ok if he needs to go.. know he may be gone when you return.. it may need to happen this way.. which makes leaving the bedside a loving gesture

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there is a time for peace. a dying body knows what it’s doing.. neither you nor your loved ones need to do much.. try to settle in .. this final stretch can be stunningly beautiful

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how nature dies

a tree.. rather than hoarding assets all the way to end ( first 100 yrs about growing, 2nd 100 living, last 100 about dying).. it begins to give away the nutrients it has generated for the last 200 yrs to nourish the ecosystem around it.. that final 100 yrs is actually the most productive and generous period of its life.. the tree’s life cycle is regenerative not because it breaks down to create something new, but because it expends a massive amount of energy to keep as many molecules viable as possible for use by the organisms that surround it

nature has been practicing how to live and die well for a very long time

after

can be vulnerable time.. but also clear eyed about what matters.. also.. your relationship to what is lost takes a new form

20 – the first 24 hrs

whom to call first; sitting w your loved one; the death cert; telling people; getting rid of equip/meds

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on sitting w the body.. death is not an emergency and that body is nothing to be afraid of.. take the time you need

21 – grief

what it is, and ways to cope; how to play a supporting role; what to give

the pain of loss stems from the power of love.. if you didn’t care.. this would all be easier

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the point is you’re altered by grief.. and unless you understand that grief presents itself in a thousand diff ways, you may misjudge yourself or others.. numbness to unending tears.. try not to rush thru it.. ‘in my haste.. put part of our relationship behind me sooner that i had to.. now i find myself wishing i could do it again, all the gut wrenching, so that i could feel closer to her’

this is can maybe be a more truthful time.. the grieving process is an opp, too.. take it

22 – how to write a eulogy and an obituary

the basics of publishing a death notice and obit; what goes into a great eulogy; how they can go wrong

be honest.. we are drawn to true stories

23 – celebrating a life

planning a gathering; how to scatter remain; other ways to honor the dead

legal places to spread ashes: park, public land, sea, air

24 – what’s left

cleaning out the house; settle estate .. close accounts; shut down digital id

last words

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death accepts us just as we are.. whether its presence helps you focus on goals or helps you let go of them.. everything is welcome.. every thought/feeling.. from glorious to foul.. no one can fail it.. total embrace is death’s core dignity..

our advice is just this: participate.. resist the notion that you have total control; resist the notion that you have none.. however you can, w whatever you’ve got, participate in your care, in your dying, in life

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palliative care et al

regrets

retire\ment communities

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