What would be a good end of life? And I'm talking about the very end. I'm talking about dying.
Cfare do mund te quanim nje fundjete te mire? E kam fjalen per fundin perfundimtar. E kam fjalen per vdekjen.
We all think a lot about how to live well. I'd like to talk about increasing our chances of dying well. I'm not a geriatrician. I design reading programs for preschoolers. What I know about this topic comes from a qualitative study with a sample size of two. In the last few years, I helped two friends have the end of life they wanted. Jim and Shirley Modini spent their 68 years of marriage living off the grid on their 1,700-acre ranch in the mountains of Sonoma County. They kept just enough livestock to make ends meet so that the majority of their ranch would remain a refuge for the bears and lions and so many other things that lived there. This was their dream.
Te gjithe ne mendojme per te jetuar mire. Une kam deshire te flas per te rritur mundesite qe te vdesim mire. Nuk jam nje gjeriatrik. Une projektoj libra leximi per parashkollor. Ajo qe di per kete subjekt vjen nga nje studim kualitativ ne nje cift. Gjate viteve te fundit, kam ndihmuar dy miq qe te kene fundin e jetes qe ata deshirojne Jim dhe Shirley Modini kaluan 68 vitet e marteses tyre duke jetuar pa elektricitet ne fermen e tyre 1.700-aker ne malet e rrethit Sonoma. Ata mbajten thjesht mjaftueshem bageti ne menyre qe shumica e fermes tyre te mbetej nje strehe per arinjte dhe luanet dhe per shume gjera te tjera qe jetonin aty. Kjo ishte endrra e tyre.
I met Jim and Shirley in their 80s. They were both only children who chose not to have kids. As we became friends, I became their trustee and their medical advocate, but more importantly, I became the person who managed their end-of-life experiences. And we learned a few things about how to have a good end.
I njoha Jim dhe Shirley rreth 80-at e tyre. Ishin te dy femije te vetem qe kishin zgjedhur mos kishin femije. Gjate kohes qe u miqesuam, une u bera e besuara e tyre dhe avokatja mjekesore, por me e rendesishmja, une u bera personi qe administroi eksperiencat e fund-jetes se tyre. Dhe ne mesuam disa gjera se si te kesh nje fund te mire.
In their final years, Jim and Shirley faced cancers, fractures, infections, neurological illness. It's true. At the end, our bodily functions and independence are declining to zero. What we found is that, with a plan and the right people, quality of life can remain high. The beginning of the end is triggered by a mortality awareness event, and during this time, Jim and Shirley chose ACR nature preserves to take their ranch over when they were gone. This gave them the peace of mind to move forward. It might be a diagnosis. It might be your intuition. But one day, you're going to say, "This thing is going to get me." Jim and Shirley spent this time letting friends know that their end was near and that they were okay with that.
Ne vitet e tyre te fundit, Jim dhe Shirley u perballen me kancerin, frakturat, infeksione si dhe semundjetj neurologjike. Eshte e vertete. Ne fund, funksioni i trupit tone dhe pavaresia bie ne zero. Ajo cfare zbuluam eshte se, me nje plan dhe me njerezit e duhur, cilesia e jetes mund te qendroje e larte. Fillimi i fundit shkaktohet nga nje rast ndergjegjesimi mbi vdekshmerine, dhe gjate kesaj kohe Jim dhe Shirley zgjodhen ruajtjen e natyres ACR per te marre persiper fermen e tyre kur ata te largohen. Kjo i dha qetesine atyre per te ecur para. Mund ta quajme nje diagnostikim por mund te jete dhe intuita jote. Por nje dite, ti do thuash "kjo dicka do me marri mua". Jim dhe Shirley e kaluan kete kohe duke i lejuar miqte e tyre te dine se fundi i tyre ishte afer dhe se ata nuk e kishin problem kete.
Dying from cancer and dying from neurological illness are different. In both cases, last days are about quiet reassurance. Jim died first. He was conscious until the very end, but on his last day he couldn't talk. Through his eyes, we knew when he needed to hear again, "It is all set, Jim. We're going to take care of Shirley right here at the ranch, and ACR's going to take care of your wildlife forever."
Vdekja nga kanceri dhe vdekja nga nje semundje neurologjike jane te ndryshme. Ne te dyja rastet, ditet e fundit jane disi qetesuese. Jim vdiq i pari. Ai ishte i ndergjegjshem deri ne fund, por diten e fundit ai nuk mund te fliste. Duke i lexuar syte, ne kuptonim se kur ai kishte nevoje ta degjonte, "Gjithcka eshte ne rregull, Jim. Ne do kujdesemi per Shirley ketu ne ferme, dhe ACR do kujdeset pergjithmone per kafshet e egra te fermes tende.
From this experience I'm going to share five practices. I've put worksheets online, so if you'd like, you can plan your own end.
Nga kjo eksperience, do ndaj me ju pese praktika. Kam vendosur ne rrjet plane, dhe nese deshironi, ju mund te planifikoni vete fundin tuaj.
It starts with a plan. Most people say, "I'd like to die at home." Eighty percent of Americans die in a hospital or a nursing home. Saying we'd like to die at home is not a plan. A lot of people say, "If I get like that, just shoot me." This is not a plan either; this is illegal. (Laughter) A plan involves answering straightforward questions about the end you want. Where do you want to be when you're no longer independent? What do you want in terms of medical intervention? And who's going to make sure your plan is followed?
E gjitha fillon me nje plan. Shumica e njerezve thone, "do kisha deshire te vdisja ne shtepi." Tetedhjete perqind e Amerikaneve vdesin ne nje spital ose ne nje azil. Duke thene se deshirojme te vdesim ne shtepi nuk eshte plan. Shume njerez thone, "Nese behem ashtu, me mire me qelloni." As ky nuk eshte nje plan; kjo eshte e paligjshme. (te qeshura) Nje plan perfshin pergjigjet e pyetjeve te drejtperdrejta per sa i perket fundit qe deshironi. Ku deshironi te gjendeni kur nuk mund te jeni me te pavarur? Cfare deshironi per termat e nderhyrjes mjekesore? Dhe kush do jete ai qe te realizoje planin tuaj te ndiqet?
You will need advocates. Having more than one increases your chance of getting the end you want. Don't assume the natural choice is your spouse or child. You want someone who has the time and proximity to do this job well, and you want someone who can work with people under the pressure of an ever-changing situation.
Do t'ju duhen avokate. Duke pasur me shume se nje, rrit mundesite tuaja per te pasur fundin qe deshironi. Mos supozoni se zgjedhja natyrale eshte bashkeshkorti ose femija. Ju duhet dikur qe ka kohen dhe afersine qe te realizoje kete pune mire, dhe ju duhet dikush qe mund te punoje me njerez nen presionin e nje situate te ndryshimit te perhershem.
Hospital readiness is critical. You are likely to be headed to the emergency room, and you want to get this right. Prepare a one-page summary of your medical history, medications and physician information. Put this in a really bright envelope with copies of your insurance cards, your power of attorney, and your do-not-resuscitate order. Have advocates keep a set in their car. Tape a set to your refrigerator. When you show up in the E.R. with this packet, your admission is streamlined in a material way.
Gatishmeria e Spitalit eshte kritike. Me shume mundesi do ju drejtojne ne nje urgjence, dhe ju duhet ta beni kete ne menyre te sakte. Pergatisni nje permbledhje ne nje faqe letre te historise tuaj mjekesore, te barnave farmaceutike dhe informacion per mjeket. Vendoseni kete nje zarf shume te ndritshem me fotokopje te siguracionit tuaj, proces-verbalin, dhe urdherin tuaj te mos-ringjalljes. Sigurohuni qe avokatet te mbajne nje kopje ne makine. Vendosni dhe nje kopje ne frigoriferin tuaj. Kur te shfaqeni ne Urgjence me kete pako, pohimi juaj eshte i efektshem ne nje menyre materialiste.
You're going to need caregivers. You'll need to assess your personality and financial situation to determine whether an elder care community or staying at home is your best choice. In either case, do not settle. We went through a number of not-quite-right caregivers before we found the perfect team led by Marsha, who won't let you win at bingo just because you're dying but will go out and take videos of your ranch for you when you can't get out there, and Caitlin, who won't let you skip your morning exercises but knows when you need to hear that your wife is in good hands.
Do ju duhen kujdestare Do ju duhet te vleresoni personalitetin tuaj si dhe situaten ekonomike per te vendosur nese nje komunitet per kujdesjen e te moshuarve ose qendrimi ne shtepi eshte zgjedhja juaj me e mire. Ne secilin rast, mos u pajtoni. Kemi kaluar nje numer shume te madh te kujdestareve jo-te mire para se te gjejme ekipin perfekt i cili drejtohet nga Marsha, qe nuk do ju lejojne te fitoni bingon vetem se ju po vdisni por do shkojne te filmojne fermen tuaj kur ju nuk mund te dilni atje jashte, dhe Caitlin, qe s'do te lejoje te anashkaloni ushtrimet e mengjesit por di kur ju keni nevoje te degjoni se gruaja juaj eshte ne duar te sigurta.
Finally, last words. What do you want to hear at the very end, and from whom would you like to hear it? In my experience, you'll want to hear that whatever you're worried about is going to be fine. When you believe it's okay to let go, you will.
Perfundimisht, disa fjale. Cfare keni deshire te degjoni ne fundin tuaj dhe nga kush deshironi ta degjoni? Nga eksperienca ime, do doni te degjoni se per gjithcka qe ju shqeteson, do shkoje mire. Dhe kur te besoni qe eshte ne rregull te largoheni, do largoheni.
So, this is a topic that normally inspires fear and denial. What I've learned is if we put some time into planning our end of life, we have the best chance of maintaining our quality of life. Here are Jim and Shirley just after deciding who would take care of their ranch. Here's Jim just a few weeks before he died, celebrating a birthday he didn't expect to see. And here's Shirley just a few days before she died being read an article in that day's paper about the significance of the wildlife refuge at the Modini ranch.
Pra, kjo eshte nje teme e cila normalisht shkakton frike dhe mohim. Ajo cka kam mesuar eshte se nese i japim pak kohe planifikimit te fund jetes, kemi mundesite me te mira per te mirembajtur cilesine e jetes. Ketu eshte Jim dhe Shirley pak pasin kane vendosur se kush do kujdesej per fermen e tyre. Ketu eshte Jim disa jave para se te vdiste, duke festuar nje ditelindje te cilen nuk besonte qe do e shikonte. Dhe ketu eshte Shirley disa dite para se te vdiste qe po i lexonin nje artikull te gazetes se asaj dite per rendesine e strehes se kafsheve te egra ne fermen Modini.
Jim and Shirley had a good end of life, and by sharing their story with you, I hope to increase our chances of doing the same.
Jim dhe Shirley paten nje fund jete te mire, dhe duke ndare historine e tyre me ju, Shpresoj te rrise shanset tona per te bere te njejten gje.
Thank you.
Faleminderit.
(Applause)
(Duartrokitje)