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(przyklejony)Bliscy - kilka subiektywnych rad
292015-11-23 04:08
autor: Piotr, dodał 2005-05-11 03:08komentuj


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[Proszę ten tekst potraktować, jako subiektywną próbę stworzenia podwalin poradnika dla bliskich. Pisałem to wszystko tylko i wyłącznie podstawie własnych doświadczeń z moją chorą dziewczyną Agnieszką i kilku rozmów z chorymi i ich bliskimi - starałem się, żeby było to jak najbardziej uniwersalne. Serdecznie proszę o surową krytykę, uwagi i przede wszystkim o kontynuację, może uda się z tego stworzyć coś pomocnego.]

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- Postępowanie chorego jest z reguły nielogiczne i nieobliczalne, możesz je odbierać jako skrajnie egoistyczne i niesprawiedliwe. Nie oczekuj "normalnych" reakcji na Twoje starania, zachowań, do których jesteś u bliskiej sobie osoby przyzwyczajony. W trakcie leczenia nic nie jest "normalne". Częściej, niż z podziękowaniami, spotkasz się z zarzutami, którę będą Cię ranić i zniechęcać. Takie zachowanie chorego może wynikać z lęku, strachu przed odrzuceniem - chory woli Cię raczej sam zniechęcić do siebie, niż odczuć Twoje zmęczenie i znużenie jego chorobą.

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- Nie pozwól choremu na zerwanie kontaktów z przyjaciółmi i otoczeniem. Jeśli dobrze znosi leczenie - niech pracuje, jeśli to niemożliwe - niech dorabia, czyta, rysuje, uczy się grać w szachy, niech robi cokolwiek. Staraj się zapewnić choremu jak najbardziej dla niego normalny tryb życia. Jeśli chory zamyka się w sobie - namawiaj raczej do prowadzenia dziennika, niż wymuszaj rozmowę.

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- Chory zwykle nie oczekuje od Ciebie zrozumienia ani popisywania się fachową wiedzą - chce raczej, żebyś go wysłuchał, czasem przytulił. Potrzebuje przede wszystkim wsparcia i nienachalnej akceptacji.

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- Bardzo często chory przestaje akceptować swoje ciało - może unikać twojego dotyku. Przełamuj opór, dotykaj. Nie unikaj seksu, nie zwracaj uwagi na blizny. To dla chorego niesamowicie ważna sprawa.

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- Nie "zarażaj" się chorobą, nie staraj się być empatyczny, chory szybko wyczuwa fałsz takiego zachowania i oddala się od Ciebie. Nie manifestuj własnych emocji. Nigdy nie pozwól na to, żeby chory odczuł Twoją obecność, jako obciążenie.

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- Nie unikaj rozmów na tematy ostateczne, ale też nie pozwalaj choremu na zbyt częste roztrząsanie tych tematów. Dbaj o to, by chory nie popadł w różne obsesje. Słuchaj uważnie uwag lekarzy, powtarzaj je choremu własnymi słowami. Pamiętaj reakcje chorego i powołuj się na nie. Jeśli chory popada w religijną, irracjonalną dewocję, poszukaj duchownych , którzy specjalizują się w rozmowach z chorymi (z reguły należących do zakonów). Inaczej w razie niepowodzeń w leczeniu chory może przeżyć głebokie załamanie wiary, które go mocno pognębi.

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- Nie pozwól sobie wejść na głowę, nie dopuść do sytuacji, w której chory Ci rozkazuje. Staraj się zachować równowagę, spełniaj oczywiste prośby, a nie każdą zachciankę. Jeśli chory każe Ci iść o północy po czekoladę do sklepu, grzecznie odmów, a przy najbliższej okazji kup czekoladę nieproszony.

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- Choroba bliskiej osoby jest dla Ciebie szalonym wyzwaniem, nie zapomnij o sobie - dbaj o wsparcie ze strony najbliższych, wypróbowanych przyjaciół lub rodziny. Ale też pamiętaj - rozmowa z ludźmi, którz nie zetknęli się z chorobą nowotworową, może być dla nich przytłaczająca - nie oczekuj bezwarunkowego zrozumienia. Ludzie, którzy sami przeżyli chorobę, bądź dotknęła ona ich bliskich, mogą zwyczajnie nie chcieć wracać do bolesnych wspomnień. Nie czuj się odrzucony z tego powodu. Nie zrywaj kontaktu z bliskimi.

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- Staraj się utrzymywać kontakt z lekarzem prowadzącym, ale nie namawiaj go do przekazywania informacji za plecami chorego. Powinniście słyszeć od lekarza to samo. Jeśli lekarz mówi Ci więcej, niż choremu - nie jest to dobry lekarz. Chory bardzo szybko, intuicyjnie wyczuwa, że wiesz więcej od niego i to budzi w nim szalony niepokój.

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- Nie pozwól, żeby chory odciął Cię od procesu leczenia, to reakcja obronna - bliska Ci osoba nie chce, żebyś oglądał ją "w takim stanie". Przynajmniej raz na jakiś czas towarzysz choremu w trakcie chemioterapii czy naświetlań - jeśli protestuje uzgodnijcie jakiś kompromis.

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- W trakcie rozmów nie unikaj słowa "rak", jeśli nowotwór medycznie nie jest rakiem. Tworzysz w ten sposób tabu, które prędzej czy później boleśnie dla chorego naruszy niezbyt delikatny lekarz. Najlepiej używaj słów "nowotwór" i "rak" naprzemiennie, zastrzegając, że "rak" jest pojęciem umownym.

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- W trakcie wizyty w szpitalu zachowuj się delikatnie, chorzy w sali mogą zachowywać się i wyglądać bardzo dziwnie lub odpychająco. Nie zwracaj uwagi na odgłosy a zwłaszcza na zapachy. Jeśli urazisz jakiegoś chorego swoją uwagą, boleśnie zranisz też osobę, którą się opiekujesz, ona też jest chora "na to samo".

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- Uważaj na rodzinę chorego - może ona stanowić wielki problem. Rodzina rzadko zachowuje rozsądny dystans, co może być dla chorego wielkim i niepotrzebnym obciążeniem. Nie bój się wkraczać i rozmawiać z rodziną o wszystkim - uświadamiaj im, że chory niekoniecznie musi co tydzień wysłuchiwać, że jest "ukochanym dzieckiem, które umiera". Jeśli jest taka potrzeba, ustal z krewnymi, kto rozmawia z lekarzami. Rodzina bywa nieoceniona przy załatwianiu różnych spraw związanych z leczeniem, pracą, postaraj się, żeby krewni chorego nie byli bezczynni.

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autor: Asica, dodał 2005-05-11 08:24komentuj


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> 2005-05-11 03:08... Piotr napisał(a):

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> - W trakcie rozmów nie unikaj słowa "rak", jeśli nowotwór medycznie nie jest rakiem. Tworzysz w ten sposób tabu, które prędzej czy później boleśnie dla chorego naruszy niezbyt delikatny lekarz. Najlepiej używaj słów "nowotwór" i "rak" naprzemiennie, zastrzegając, że "rak" jest pojęciem umownym.

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Twoja ocena jest subiektywna i to bardzo w tej kwestii..Ja zabiore tu glos od drugiej strony,strony chorego.Z wlasnego doswiadczenia wiem,jak bardzo boli uzycie slowa "rak",jesli osoba chora ma swiadomosc,ze ziarnica zlosliwa jest nowotworem zlosliwym,ale NIE JEST RAKIEM.Pamietam tez dokladnie jaka jazde zrobilam swoim bliskim za uzywanie tego BLEDNEGO okreslenia do mojej choroby.Przeprowadzilam propagande doksztalcajaca w tym zakresie i wtedy bylo juz ok.

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Zaden lekarz,zadna pielegniarka,a nawet chirurg(pierwszy kontakt w szpitalu onkologicznym)nie powiedzial mi,ze MAM RAKA,zawsze padalo okreslenie NOWOTWOR.Fakt,moze trafic sie jakis konowal,co zle(mniej delikatnie)otworzy dziob.Ale uslyszec slowo "rak"od obcej osoby nie boli tak samo jak od bliskiej..

+0

autor: Aisak, dodał 2005-05-11 11:48komentuj


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> - Nie pozwól choremu na zerwanie kontaktów z przyjaciółmi i otoczeniem.

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Z doświadczenia wiem, że czasem przerwa w kontaktach z tzw "otoczeniem" jest dobra. Nie mówię tu o naprawdę bliskich osobach (choć i z nimi bywa róznie), ale znajomych w szkole, na uczelni, sąsiadach itp. Było dla mnie potworne opowiedzieć coś komuś i usłyszeć zdawkowe-"no...ale widzę, że się trzymasz, oby tak dalej, będzie dobrze", kiedy moje ciało i dusza cierpiały...w końcu sama witałam wszystkich z usmiechem i wypracowanym tekstem "spoko, trzymam się, daję radę" by broń Boże nie usłyszeć tego pierwsza czy się kolejny raz sparzyć.

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Chory może zachowywać się nieco irracjonalnie, ale bez przesady-sam wie co dla niego dobre!Jeśli nie miałam ochoty na ten teatrzyk-to nie. Nie mówcie choremu co dla niego dobre, bo najzwyczajniej w świecie nie jesteście na jego miejscu, nie żyjecie jego zyciem godzina po godzinie z tym bagażem.

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> - jesli dobrze znosi leczenie - niech pracuje, jeśli to niemożliwe - niech dorabia, czyta, rysuje, uczy się grać w szachy, niech robi cokolwiek. Staraj się zapewnić choremu jak najbardziej dla niego normalny tryb życia.

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Ale nie wtedy jesli tobie/wam wydaje się że chory znosi dobrze leczenie, bo najzwyczajniej w świecie może robic dobrą minę do złej gry by was nie zranić-skoro rodzina, ukochany cały czas powtarza: "jesteś taka silna/silny, wspaniale sobie radzisz"-jak mozna powiedzieć, że wcale tak nie jest? Spokojnie, nikt nie chce być bezsilny i nieprzydatny. Jesli tylko chory czuje się lepiej (SAM TO CZUJE ŻE JEST LEPIEJ) na pewno da znać i zacznie być aktywny! Ale nawet wtedy nie proponujcie nic na siłę! Powiedzenie "zawsze chciałaś/eś nauczyć się jeździć na rolkach-chcesz?" może w tej sytuacji chorego dobić. Może odpowiedzieć Ci: Wiesz..jakoś to już nie jest moim marzeniem", kiedy naprwdę pomyśli"Boże! Jak on/ona może myśleć że mam na to siłę? Jestem cięzko chora/ry. On/ona znowu nic nie rozumie. Czuję się lepiej ale nie w jego/jej kategoriach tylko w kategorii chorego. Mogę iść na spacer, ale przecież nie mogę uprawiać jeszcze spotru. Jestem beznadziejna/ny...do niczego się nie nadaję.A on/ona znowu mi to robi..."

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> - Jeśli chory zamyka się w sobie - namawiaj raczej do prowadzenia dziennika, niż wymuszaj rozmowę.

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Nie nalezy DO NICZEGO NAMAWIAĆ. Dla mnie pisanie dziennika tuż po cięzkich chwilach było jak zadawanie sobie bólu rozpamiętywaniem tego co już za mną. Wszystko było zbyt zywe i intensywne. Opisując chemię sprzed 3 dni miałam od razu odruch wymiotny. Probowałam i ja np nie mogłam pisać. Bardzo długo "po" nie mogłam. Rozmowa tak-ale na pewno nie w traumatycznych chwilach-wtedy najzwyczajniej w świecie nie ma siły mysleć, mówić..chce się zniknąć. Trzeba przechodzić przez kolejne problemy "na zywioł", bez analizowania...dopiero potem przychodzi reflaksja i jakieś doświadczenie wyciągnięte na przyszłość. POza tym chory zamyka się głownie dlatego, ze wydaje mu się iż kolejna rozmowa nie wnosi nic nowego, że zawsze przebiega tak samo. Często kończy się płaczem i obustronną bezsilnością. Ile razy można się obnażać ze swoim strachem przed przyszłością, kiedy zdajesz sobie sprawę że twoi bliscy nie umieją ci pomóc, nie dadzą ci gwarancji wyzdrowienia czy mniejsego bolu, bo niby jak???

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Dodam jeszcze od siebie, że dla mnie najgorsze były rozmowy o przyszłości dalszej. Chorego dobija niepewność jutra, katorgą jest NIEMOŻNOŚĆ PLANOWANIA co zrobię za 2 tygodnie, gdzie będę za miesiąc, dwa. Chory myśli w kategoriach godziny, doby, żyje w "odcinkach" od chemii do chemii...kolejny dzień to już sukces. Przetrwanie po chemii do rana - to zwycięstwo. Nie zmuszajcie chorego do myślenia długodystansowego. W dniach dobrego samopoczucia, kiedy wydaje wam się że możecie z chorym coś zaplanować też może być to złudne. Chory mysli wtedy przecież o tym, że żyje tu i teraz, że chce przeżyć ten czas jak najlepiej. Że sobie coś dobrego zje. Cieszy spacer, cieszy nawet zapach spalin na ulicy;) To jest ważne-nie to co potem. Ciesz się z chorym jego radościami, bo nawet nie umiesz sobie wyobrazić jaką traumą są ładowane w nas świństwa w czasie leczenia.

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> - Nie pozwól sobie wejść na głowę, nie dopuść do sytuacji, w której chory Ci rozkazuje. Staraj się zachować równowagę, spełniaj oczywiste prośby, a nie każdą zachciankę. Jeśli chory każe Ci iść o północy po czekoladę do sklepu, grzecznie odmów, a przy najbliższej okazji kup czekoladę nieproszony.

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Nie do końca jest to chyba słuszne. W mysl tego co napisałeś:

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> - Postępowanie chorego jest z reguły nielogiczne i nieobliczalne, możesz je odbierać jako skrajnie egoistyczne i niesprawiedliwe. Nie oczekuj "normalnych" reakcji na Twoje starania, zachowań, do których jesteś u bliskiej sobie osoby przyzwyczajony. W trakcie leczenia nic nie jest "normalne".

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Chory często nie ma ochoty na nic. Czuje że juz nigdy niczego nie zje, nie wypije, że nie przyswaja już niczego... I nagle może przyjść wielka ochota na coś. Przekonanie że jak "to" zjesz to będzie lepiej, że czujesz, że "to" możesz zjeść. Czuje się przecież głód mimo niemożności jedzenia. Mówisz więc bliskiej osobie o tym...że chyba to uda ci się zjeść, że naszła cię ochota. I tu Twoja rada. Niestety, ale wtedy kiedy przyniesiesz czekoladę bez okazji za dwa dni może już ona najnormalniej w świecie budzić odruch wymiotny:) Tak to niestety wygląda w chorobie...

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> - Choroba bliskiej osoby jest dla Ciebie szalonym wyzwaniem, nie zapomnij o sobie - dbaj o wsparcie ze strony najbliższych, wypróbowanych przyjaciół lub rodziny.

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Jednak pamiętaj że chory to nadal twoja żona/mąż/bliska lub najbliższa osoba. Mimo niedomagania i nie zawsze racjonalnego myślenia to chory chce być nadal twoim najlepszym powiernikiem, kimś komu ufasz. Jesli po jakimś czasie dowie się, że ze swych rozterek i strachu zwierzasz się koledze czy koleżance może się poczuć zdradzony lub zawstydzony- także tym, że komuś mowisz o jego słabościach. Niech wszystko między wami będzie jasne od początku.

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To takie rzeczy ktore przyszły mi na myśl. Małe podsumowanie własnych doświadczeń chorego na zz. POzdrawiam serdecznie!

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autor: Zoisyte, dodał 2005-05-11 11:54komentuj


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A tacę z jedzeniem należy podawać choremu prz pomocy 2m kija :)

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A tak na poważnie.

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Każdy jest inny, każdy innaczej to znosi.

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Taki poradnik się nie sprawdzi.

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To trzeba przeżyć.

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Mnie bardzo wspierał mój Kot :)

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I pomagała cała reszta rodziny.

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autor: Aisak, dodał 2005-05-11 11:55komentuj


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...i przepraszam za powtórzenia, ale pisałam szybko - jak zwykle kiedy wspominam okres choroby.

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autor: 121277, dodał 2005-05-11 12:30komentuj


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> 2005-05-11 11:54... Zoisyte napisał(a):

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> A tacę z jedzeniem należy podawać choremu prz pomocy 2m kija :)

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>

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> Mnie bardzo wspierał mój Kot :)

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> I pomagała cała reszta rodziny.

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Misiek nawet nie chciał czasem mnie widzieć, odpowiedzi na pytania (jak się czuje, czy czegoś chce itp.) pisal na kartkach - miał takie dwie - TAK i NIE - i mi je pokazywał.

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Rozmawiać nie chciał, dopiero niedawno jakoś otworzył się na rozmowy o tym, co było.

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Rozumiem go, bo bardzo dużo mnie kosztowało opisanie naszej historii - pisałam tydzien po kawaleczku, znowu wracały dawne lęki i emocje związane z całym rokiem choroby.

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Nam z kolei pomoglo planowanie, wyznaczanie celu - za 2 miesiace zrobimy to i to, i MUSISZ mieć siłę, CHCESZ tego i DASZ RADĘ. Taka motywacja była bardzo budująca i staraliśmy się nie myśleć, że będzie inaczej, choć oczywiscie dopuszczaliśmy taką możliwosć.

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Ważne jest wyczucie, wsłuchiwanie się w potrzeby chorego...

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instynkt... Serce najlepiej pokazuje, co trzeba robić.

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Pozdrawiam

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Wiola - Kot

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+0

autor: Baldi, dodał 2005-05-11 13:12komentuj


czytaj blog

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Swietny tekst Piotrze, choc jak sam tytul wskazuje - jest on (niestety) bardzo subiektywny :-(

+0

autor: Zoisyte, dodał 2005-05-11 15:10komentuj


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> 2005-05-11 12:30... 121277 napisał(a):

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> Misiek nawet nie chciał czasem mnie widzieć, odpowiedzi na pytania (jak się czuje, czy czegoś chce itp.) pisal na kartkach - miał takie dwie - TAK i NIE - i mi je pokazywał.

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Mój pech że byłem odporny na środki przeciwwymiotne :)

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Więc moje otwarcie ust mogło się źle skończyć.

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Dlatego też każdego trzeba traktować innaczej.

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Tak postępuje moja doktor i za to ją uwielbiam :)

+0

autor: Kobieta Piotra, dodał 2005-05-15 03:27komentuj


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jako źródło doświadczeń Piotra - czyli chora - chciałam dodać słów kilka:

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primo - jasne, że tekst jest subiektywny, każdy chory reaguje inaczej, ale może warto zebrać takie rady, niech będą to doświadczenia bliskich i opinie nas - ziarniaków. Pamiętajmy, że bliskim wcale nie jest dużo łatwiej niż nam a i chorym może to pomóc, kiedy bliski będzie miał podpowiedź co robić i jak się zachować. Zróbmy poradnik dla bliskich i jeszcze jeden dla chorych - jak radzić sobie z 'niekumatymi' bliskimi.

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I nie traktujcie wszystkiego tak dosłownie i indywidualnie (to do Aisaka przede wszystkim)- poradnik jest tak samo subiektywny jak Twój komentarz - inaczej się nie da.

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> z Doświadczenia wiem, że czasem przerwa w kontaktach z tzw "otoczeniem" jest dobra <...>Było dla mnie potworne opowiedzieć coś komuś i usłyszeć zdawkowe-"no...ale widzę, że się trzymasz, oby tak dalej, będzie dobrze" <...>w końcu sama witałam wszystkich z usmiechem i wypracowanym tekstem "spoko, trzymam się, daję radę" by broń Boże nie usłyszeć tego pierwsza czy się kolejny raz sparzyć.

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a ja z doświadczenia wiem, że przerwa w kontaktach nie jest dobrym rozwiązaniem.Mnie najbardziej denerwowały teksty w stylu "o rety, to straszne, nie wiem jak to wytrzymujesz..." - ja wyszłam z założenia, że będzie dobrze i byle by przetrwać upierdliwe leczenie. Nie przerwałam pracy a znajomi szybko zaczeli mnie traktować normalnie dzięki czemu przy nich zapominam o chorobie. Mam za to problem z ludźmi z którymi ograniczyłam kontakt - zachowują się 'dziwnie' bo nie zdążyli się przyzwyczaić do tej sytuacji.

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> > - jesli dobrze znosi leczenie - niech pracuje <...> robi cokolwiek.

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> Ale nie wtedy jesli tobie/wam wydaje się że chory znosi dobrze leczenie, bo najzwyczajniej w świecie może robic dobrą minę do złej gry...

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Zgadzam się, ale może też nie być świadom tego, że da radę coś zrobić, bo jak człowiek pozwoli się pochłonąć chorobie, to nie potrafi wyjść z marazmu i poczycia bezsilności. Ja zaraz po chemii siedziałam w domu i nie byłam w stanie nic robić, a po trzech dniach wracałam do pracy (taki system ustaliłam z szefostwem - po tym czasie mijał najgorszy kryzys) i chociaż pochątkowo czułam jeszcze osłabienie to z każdym następnym dniem było tylko lepiej (a pracuję w Media Markt - 8godz. na nogach). Nie wyobrażam sobie jakbym przetrwała leczenie bez pracy czas minął mi szybciej, nie myślałam tyle o chorobie, nie czułam się jak ktoś bezwartościowy i utrudniający życie blskim.

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Zastrzegam, że nie twierdzę, że jak ktoś nie ma siły to tylko dlatego, że użala się nad sobą - sama popadałam w marazm jak tylko miałam trochę wolnego - brak motywacji. Nie twierdzę też że ktokolwiek powinien się zmyszać do pracy. Bliski ma wspierać i motywować do jakichś działań, ale przy zachowaniu rozsądku i delikatnie - nic na siłę -żeby się chory bardziej nie podłamał, bo nie może czegoś zrobić.

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>...skoro rodzina, ukochany cały czas powtarza: "jesteś taka silna/silny, wspaniale sobie radzisz"-jak mozna powiedzieć, że wcale tak nie jest?

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można ... trzeba! chory musi mówić co czuje - bo skąd zdrowy ma wiedzieć co myślisz i jak ma się zachować jeśli mu nie powiesz.

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>Powiedzenie "zawsze chciałaś/eś nauczyć się jeździć na rolkach-chcesz?" może w tej sytuacji chorego dobić. Może odpowiedzieć Ci: Wiesz..jakoś to już nie jest moim marzeniem", kiedy naprwdę pomyśli"Boże! Jak on/ona może myśleć że mam na to siłę?

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przesadzasz... wszystko zależy oczywiście od tego jak bliski zada pytanie i co zaproponuje, ale nie róbmy też z siebie-chorych sierot.

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> > - Jeśli chory zamyka się w sobie - namawiaj raczej do prowadzenia dziennika, niż wymuszaj rozmowę.

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>

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> Nie nalezy DO NICZEGO NAMAWIAĆ. Dla mnie pisanie dziennika tuż po cięzkich chwilach było jak zadawanie sobie bólu rozpamiętywaniem tego co już za mną.

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Jasne że nie należy zmuszać. Ja też nie pisałam dziennika - nie znoszę tego, ale Piotrek namówił mnie do robienia notatek - zapisywałam w kalendarzu hasła w stylu "denerwuje mnie gdy..." a kiedy już czyłam się lepiej, nabierałam dystansu dzieliłam się tą refleksją - dobry sposób na pozbieranie myśli i naukę mówienia o chorobie.

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>POza tym chory zamyka się głownie dlatego, ze wydaje mu się iż kolejna rozmowa nie wnosi nic nowego <...>kiedy zdajesz sobie sprawę że twoi bliscy nie umieją ci pomóc, nie dadzą ci gwarancji wyzdrowienia czy mniejsego bolu, bo niby jak???

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no nie, wymaganie od kogoś gwarancji wyzdrowienia to mocna przesada... Nie na tym ma polegać pomoc. Znowu słyszysz to samo? To wyjaśnij: "nie mów mi, że mam się nie martwić, bo mój strach jest irracjonalny - bądź po prostu przy mnie" albo "jest mi źle, ale zostaw mnie chwilowo w spokoju, dam Ci znak jak ochłonę, wrócimy do tematu" ... "nie mów mi, że wiesz co czuję, bo nie wiesz, bądź cierpliwy, wysłuchaj tego co mówię, nie komentuj, pytaj..."

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Wiem, że nie jest to łatwe, szczególnie na początku, człowiek wścieka się, że nie dość, że musi sobie radzić z chorobą, to jeszcze ma na głowie bliskich.

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I dlatego powinien powstać taki poradnik - jak chory nie będzie miał siły sam tłumaczyć będzie mógł podrzucić ściągę,)

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> > - Choroba bliskiej osoby jest dla Ciebie szalonym wyzwaniem, nie zapomnij o sobie - dbaj o wsparcie ze strony najbliższych, wypróbowanych przyjaciół lub rodziny.

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>

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> Jednak pamiętaj że chory to nadal twoja żona/mąż/bliska lub najbliższa osoba. Mimo niedomagania i nie zawsze racjonalnego myślenia to chory chce być nadal twoim najlepszym powiernikiem, kimś komu ufasz. /.../

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to racja

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A tak poza tym to cieszę się, że jestem chorą, a nie dziewczyną/ siostrą/ dzieckiem chorego - nie chciałabym być na ich miejscu - ciąży na bliskich strach o nas, poczucie bezradności ale i odpowiedzialności za kochaną osobę oraz własne zachowanie - jak pomagać i nie szkodzić.

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+0

autor: Aisak, dodał 2005-05-15 13:44komentuj


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> zróbmy poradnik dla bliskich i jeszcze jeden dla chorych - jak radzić sobie z 'niekumatymi' bliskimi.

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> I nie traktujcie wszystkiego tak dosłownie i indywidualnie (to do Aisaka przede wszystkim)- poradnik jest tak samo subiektywny jak Twój komentarz - inaczej się nie da.

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w pełni zdaję sobie z tego sprawę i nikomu nie zarzucałam, że jest w swych wypowiedziach subiektywny! Każdy jest inny, inaczej to czy owo przechodził. Napisałam z czym nie mogę się zgodzić, bo u mnie było zupełnie inaczej. Skoro nie chcecie tu zebrać indywidualnych doświadczeń to o co w ogole chodzi w tym wątku? Poradnik. To chyba od początku skazane było na niepowodzenie... i w tym momencie doskonale to widać. Przecież nikomu nie wmawiam co miał lub ma czuć! Po prostu nie mogłam się zgodzić, subiketywnie, z tym co zostało napisane na początku wątku...Trochę żałuję, że się wypowiedziałam, bo absolutnie to nie są rzeczy do przedyskutowania. U każdego to wygląda inaczej i tyle. POzdrawiam wszystkich serdecznie!

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autor: anka, dodał 2005-05-17 15:24komentuj


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Pewnie nic odkrywczego nie napiszę, ale chcę dodać swój głos w sprawie "Poradnika dla bliskich". Uważam, że każdy chory przeżywa na swój sposób chorobę i taki poradnik raczej nie będzie miał zastosowania w praktyce. Jestem chora na ziarnicę (3 tyg. temu zakończyłam naświetlania). Nie robiłam tajemnicy ze swojej choroby, ale też nie lubiłam na ten temat rozmawiać. Nie chciałam użalać się nad sobą i robić z siebie "męczennicy". Starałam się żyć normalnie tzn. przez cały okres leczenia chodziłam do pracy, spotykałam się z rodziną i znajomymi.Jednak nie robiłam nic wbrew sobie, nie pokazywałam za wszelką cenę "jaka to jestem dzielna i silna":-). Jeżeli czułam się źle, to zostawałam w domu i przesypiałam trudne chwile. Moja rodzina i znajomi zachowali się najwspanialej jak mogli. Nie narzucali się i na siłę nie próbowali mi pomagać. Wystarczyła mi sama świadomość, że są ze mną i że mogę na nich liczyć gdyby zaszła taka potrzeba.

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Tak więc uważam, że poradniki... w tej kwestii raczej nie pomogą i najlepszym "lekarstwem" dla chorego i osób go otaczających jest wzajemne zaufanie i zrozumienie.

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Ps. Sprawdzonym lekarstwem jest również miłość:-).

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autor: Kathyhh, dodał 2008-02-02 22:25komentuj


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> O 03:08, dnia 2005-05-11 Piotr napisał(-a):

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> - Nie pozwól, żeby chory odciął Cię od procesu leczenia, to reakcja obronna - bliska Ci osoba nie chce, żebyś oglądał ją "w takim stanie". Przynajmniej raz na jakiś czas towarzysz choremu w trakcie chemioterapii czy naświetlań - jeśli protestuje uzgodnijcie jakiś kompromis.

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Jak mam to zrobic? Mój chłopak jest chory i nie pozwala NIKOMU odwiedzic się w szpitalu gdy leży na chemii... Nikomu... Gdy zaczynam ten temat natychmiast robi się zły i mówi ze nie chce zebym go widziala "w takim stanie" i na zaden kompromis nie chce pójść a wbrew jego woli boję sie tam przyjść bo obawiam się ze to przyniesie więcej szkody niż pożytku...

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autor: Ania, dodał 2008-02-04 23:51komentuj


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ja osobiscie tez na kazdej chemii bylam sama i mi to pasowalo, czytalam sobie ksiazki i moglam odleciec myslami od chemii, siedzenie i rozmawianie z kims bliskim na pewno by mnie meczylo..czasem drzemalam, wiec rozumiem go ze moze nie chciec towarzystwa.

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autor: Kati, dodał 2008-02-07 19:35komentuj



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> O 22:25, dnia 2008-02-02 Kathyhh napisał(-a):

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> > O 03:08, dnia 2005-05-11 Piotr napisał(-a):

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> > - Nie pozwól, żeby chory odciął Cię od procesu leczenia, to reakcja obronna - bliska Ci osoba nie chce, żebyś oglądał ją "w takim stanie". Przynajmniej raz na jakiś czas towarzysz choremu w trakcie chemioterapii czy naświetlań - jeśli protestuje uzgodnijcie jakiś kompromis.

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>

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>

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> Jak mam to zrobic? Mój chłopak jest chory i nie pozwala NIKOMU odwiedzic się w szpitalu gdy leży na chemii... Nikomu... Gdy zaczynam ten temat natychmiast robi się zły i mówi ze nie chce zebym go widziala "w takim stanie" i na zaden kompromis nie chce pójść a wbrew jego woli boję sie tam przyjść bo obawiam się ze to przyniesie więcej szkody niż pożytku...

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wiesz, wtedy czlowiek ma specyficzny nastroj... ja po chemii zle sie czulam i juz nawet przez to nie chcialam zeby bliscy patrzyli jak cierpie i sie mecze.... a dodatkowo jest faktycznie kiepski humor, szczegolnie jak lato za oknem i duzo szczesliwych beztroskich osob, szpital nie jest dobrym miejscem do przesiadywania,ja sie nalezalam bo musialam,ale nie chcialam skazywac na to bliskich

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autor: Kati, dodał 2008-02-07 19:40komentuj



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> O 03:08, dnia 2005-05-11 Piotr napisał(-a):

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> [Proszę ten tekst potraktować, jako subiektywną próbę stworzenia podwalin poradnika dla bliskich. Pisałem to wszystko tylko i wyłącznie podstawie własnych doświadczeń z moją chorą dziewczyną Agnieszką i kilku rozmów z chorymi i ich bliskimi - starałem się, żeby było to jak najbardziej uniwersalne. Serdecznie proszę o surową krytykę, uwagi i przede wszystkim o kontynuację, może uda się z tego stworzyć coś pomocnego.]

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>

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>

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> - Postępowanie chorego jest z reguły nielogiczne i nieobliczalne, możesz je odbierać jako skrajnie egoistyczne i niesprawiedliwe. Nie oczekuj "normalnych" reakcji na Twoje starania, zachowań, do których jesteś u bliskiej sobie osoby przyzwyczajony. W trakcie leczenia nic nie jest "normalne". Częściej, niż z podziękowaniami, spotkasz się z zarzutami, którę będą Cię ranić i zniechęcać. Takie zachowanie chorego może wynikać z lęku, strachu przed odrzuceniem - chory woli Cię raczej sam zniechęcić do siebie, niż odczuć Twoje zmęczenie i znużenie jego chorobą.

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> -

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Piotrek-kawał dobrej roboty z tymi radami...

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sadze ze wiele osob zna te uczucia bardzo dobrze, wiadomo ze kazdy ma inna sytuacje-inna rodzine i bliskich, kazdy jest po prostu inny, ale te rady duzo mowia i kochajacej osobie pomoga

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autor: patty, dodał 2008-03-25 16:52komentuj


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Tak bardzo bym chciała, żeby był jakiś poradnik pt: 'Jak postępować z chorym'.Ale nie ma. Wczoraj odwiedziłam piętnastoletnią siostrę. Ma nawrót, zaledwie po kilku miesiącach.

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I tak sobie myślę, skoro mi jest tak trudno, jak musi być jej?

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I jak musi być źle rodzicom, którzy tracą, na własnych oczach, córkę.. Cholernie to niesprawiedliwe, nie wiem, jak sobie radzić, jak pomagać/ wspierać jednocześnie ją.

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autor: kati, dodał 2008-05-12 21:58komentuj


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> O 22:25, dnia 2008-02-02 Kathyhh napisał(-a):

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> > O 03:08, dnia 2005-05-11 Piotr napisał(-a):

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> > - Nie pozwól, żeby chory odciął Cię od procesu leczenia, to reakcja obronna - bliska Ci osoba nie chce, żebyś oglądał ją "w takim stanie". Przynajmniej raz na jakiś czas towarzysz choremu w trakcie chemioterapii czy naświetlań - jeśli protestuje uzgodnijcie jakiś kompromis.

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>

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>

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> Jak mam to zrobic? Mój chłopak jest chory i nie pozwala NIKOMU odwiedzic się w szpitalu gdy leży na chemii... Nikomu... Gdy zaczynam ten temat natychmiast robi się zły i mówi ze nie chce zebym go widziala "w takim stanie" i na zaden kompromis nie chce pójść a wbrew jego woli boję sie tam przyjść bo obawiam się ze to przyniesie więcej szkody niż pożytku...

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pozostaje tylko uszanowac to i byc blisko jak juz wroci do domku...:( innej rady nie widze

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autor: Caro;), dodał 2008-09-04 18:35komentuj


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tekst naprawde swietny, duzo w tym wszytskim prawdy;) Ale nie wszyscy tez przechodza to tak ciezko- duzo zalezy od nastawienia chorego;) sama chorowałam i powiem, co mnie denerwowalo strasznie...Wlasnie byli to krewni. Moj chłopak rozmawial ze mna normlanie na temat mojej choroby, ale tez nie mowilismy o tym tak czesto bo nie czulam takiej potrzeby- wiedzialam ze jestem chora, ale to mnie nie zalamalo bo od poczatku wiedzialam ze z tego wyjde, bo nie moglo byc przeciez inaczej;) Przyjaciele też kompletnie nie dali mi odczuc tego w jakiej sytuacji sie znalazlam, traktowali mnie zupelnie normlanie, tak jak zawsze. Jednak krewni, na pewno nieświadomie bo przeciez nie chcieli abym sie tym zamartwiala ale najgorsze byly te ich spojrzenia, w ktorych wyraznie dalo sie wyczytac ..nie wiem..no taki niepokoj, zal nad tym co mnie spotkalo...wlasnie! bylo im mnie zal i nie rozumieli ze niepotrzebnie. Taka rada dla krewnych: jezeli widzicie ze chory radzi sobie calkiem dobrze to nie patrzcie na niego z litoscia, bo uwierzcie ze to nie pomaga a podlamuje czlowieka.

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autor: rydzadam, dodał 2008-09-04 21:54komentuj


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A ja Wam powiem, że 90% z tego tekstu ma sens i sprawdzało się w naszym przypadku. Szkoda, że wcześniej, przed chorobą żony, wielu rzeczy nie wiedziałem w zakresie kontaktów z nieuleczalnie chorym. Jednak w trakcie można się wiele nauczyć. Ważne, żeby na każdym kroku zrozumieć zachowanie chorego, zwłaszcza jego przygnębienie, niechęć do rozmów, kontaktów z ludźmi, nieodbierania telefonów, itp. Czasami tak jest i najczęściej przechodzi po godzinie, czy dopiero - paru dniach. Ważne, żeby dużo rozmawiać, jeśli chory tego potrzebuje, przytulać, masować plecy, i takie tam rzeczy, nawet zdecydowanie bardziej "intymne" i spontaniczne, jeśli wiecie o co chodzi :), jeśli tylko chory ma na to ochotę i to bez względu na jego/jej stan zdrowia i siły. Doceni to i poczuje się lepiej. Gwarantuję. Najtrudniejsze i najbardziej traumatyczne jest jednak to, co niestety może nastąpić - zachowanie się w ostatnich dniach życia chorego, kiedy szanse na jego przeżycie są minimalne. Na to już nie ma mądrych, kiedy przyjdzie się pogodzić ze śmiercią bliskiego. Ja w końcu wymiękłem i po ostatnim wyniku PET (baaaaardzo nieciekawym) pierwszy raz poryczałem się przy żonie. Wcześniej zawsze się powstrzymywałem. Takie zachowanie nie służy dobrze choremu. Nie należy się przy nim moim zdaniem rozklejać, bo świadczy to o braku naszej nadziei na wyleczenie, czy poprawę stanu zdrowia.

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To tyle. Jakby ktoś miał pytania - nie krępować się :).

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autor: emi, dodał 2009-06-17 21:22komentuj


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"A tak poza tym to cieszę się, że jestem chorą, a nie dziewczyną/ siostrą/ dzieckiem chorego - nie chciałabym być na ich miejscu - ciąży na bliskich strach o nas, poczucie bezradności ale i odpowiedzialności za kochaną osobę oraz własne zachowanie - jak pomagać i nie szkodzić "- tak, to prawda jestem matką, której dziecko choruje i moja dusza i ciało "wyje"

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autor: akpa, dodał 2009-12-14 16:15komentuj


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> O 21:54, dnia 2008-09-04 rydzadam napisał(-a):

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> A ja Wam powiem, że 90% z tego tekstu ma sens i sprawdzało się w naszym przypadku. Szkoda, że wcześniej, przed chorobą żony, wielu rzeczy nie wiedziałem w zakresie kontaktów z nieuleczalnie chorym. Jednak w trakcie można się wiele nauczyć. Ważne, żeby na każdym kroku zrozumieć zachowanie chorego, zwłaszcza jego przygnębienie, niechęć do rozmów, kontaktów z ludźmi, nieodbierania telefonów, itp. Czasami tak jest i najczęściej przechodzi po godzinie, czy dopiero - paru dniach. Ważne, żeby dużo rozmawiać, jeśli chory tego potrzebuje, przytulać, masować plecy, i takie tam rzeczy, nawet zdecydowanie bardziej "intymne" i spontaniczne, jeśli wiecie o co chodzi :), jeśli tylko chory ma na to ochotę i to bez względu na jego/jej stan zdrowia i siły. Doceni to i poczuje się lepiej. Gwarantuję. Najtrudniejsze i najbardziej traumatyczne jest jednak to, co niestety może nastąpić - zachowanie się w ostatnich dniach życia chorego, kiedy szanse na jego przeżycie są minimalne. Na to już nie ma mądrych, kiedy przyjdzie się pogodzić ze śmiercią bliskiego. Ja w końcu wymiękłem i po ostatnim wyniku PET (baaaaardzo nieciekawym) pierwszy raz poryczałem się przy żonie. Wcześniej zawsze się powstrzymywałem. Takie zachowanie nie służy dobrze choremu. Nie należy się przy nim moim zdaniem rozklejać, bo świadczy to o braku naszej nadziei na wyleczenie, czy poprawę stanu zdrowia.

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> To tyle. Jakby ktoś miał pytania - nie krępować się :).

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Mój mąż ma już trzeci nawrót zz. Jutro drugi autoprzeszczep. Pierwszy przeszedł bardzo źle - zapalenie błon śluzowych IV stopnia. Gdyby nie moja praktycznie 24 godzinna obecność przy nim nie wiem czy by z tego wyszedł. Cierpiał okropnie, ja z nim. Różnica miedzy nami jest taka, ze on prawie nic z tego okresu nie pamięta a ja wszystko, każdy wzrost temperatury, każdy dzwonek po pielęgniarki. Te ostatnie tez można podzielić na dwie grupy, jedne myślały, że to koniec, inne były zniecierpliwione "brakiem współpracy ze strony chorego". Lekarze zdziwieni - przecież "mąż tak dobrze wcześnie znosił chemię". I ja z tym wszystkim - z chorym mężem, którego kocham ponad życie ale, który chce mieć tylko "święty spokój" a j "truję" czyli próbuje wmusić odrobinę np.kisielku; ja i telefony od rodziny, która czeka tylko na słowa "owszem było źle, ale już jest lepiej"; ja i telefony, których nie ma - "nie dzwonimy, bo się boimy tego co nam powiesz". Tylko znajomi, do których jeździłam wziąć prysznic i czasem zdrzemnąć się jakieś dwie godzinki powiedzieli, ze w sumie to nie wiedzą kto ma gorzej ja czy mój mąż. Płakałam, pewnie ze płakałam ale tak, żeby mój mąż tego nie widział. Wtedy. Tym razem nie jest tak pięknie.Płakałam pod pocztą, jak odebraliśmy wyniki PET. Płakałam u lekarza w gabinecie. Nie chciałam, łzy same leciały. Wstyd mi teraz. Mój mąż mnie pocieszał, zamiast ja jego. Ale to, że okazałam strach uświadomiło mojemu mężowi, że go rozumiem, że wiem co go czeka.

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Aha, poprzednim razem w jakimś przepływie świadomości narysował mi palcem w powietrzu serce, zrozumiałam wtedy, ze muszę być przy nim, że warto, nawet jeśli czasem moja obecność wydaje się dla niego uciążliwa. Kiedy wyszedł z choroby bardzo często powtarzał mi, że dał radę dzięki mojej obecności. Postanowiłam, że teraz też będę przy nim, ale nie mogę - "zakaz odwiedzin- wirus A/H1N1". Nie wiem czy do świąt Bożego Narodzenia otworzą szpital. A jak się nie uda... nawet się nie pożegnałam...

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autor: Hetspijt, dodał 2011-03-22 14:29komentuj


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Jakikolwiek poradnik jest dobry. To jest tak wielki szok dla rodziny/bliskich/przyjaciół, że każdą pomoc przyjmą z "radością". A szczególnie od Nas - chorych.

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Nikt, kto nagle spotyka się z chorobą nie ma gotowego przewodnika po niej. Więc nawet subiektywny przewodnik jest lepszy niż żaden. Każda rada, pomoc od tych już "doświadczonych" była bardzo cenna.

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Myśle, że taka zbiorowa praca, bez komentarzy: "a właśnie nie!", "kompletnie inaczej!", byłaby bardzo cenna! Tu nie potrzeba naukowo-stylistycznej analizy prawny bezwzględnej - tu potrzeba wsparcia!

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Pamiętam ten dzień, kiedy pierwszy raz w życiu wszedłem na oddział onkologiczny pełen "łysych". Obrażony i obużony, że to musi być jakaś kosmiczna pomyłka, ja tu nie należe... (...)

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Miesiąc później już wszyscy znaliśmy swoje historie i lokalne plotki. Po ośmiu tygodniach wyszedłem i znów poczułem się obco. Jakiś świat dziwnych ludzi, dla których problemem był kolor butów! A ja znów mogłem chodzić w czymkolwiek! Wtedy pomyślałem - i kto tu jest chory?

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Jak trzeźwy pijanego, tak zdrowy chorego nigdy nie zrozumie. I odwrotnie... Brakuje wsparcia tym PRZED od tych co już PO.

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autor: Piter1151, dodał 2011-04-30 09:03komentuj



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Osobiście uważam,że wygrana z ziarnicą zależy od woli przetrwania i chęci do życia. Pragnienie życia jest najważniejsze. Jakiekolwiek poradniki mijają się z celem,gdyż każdy z nas żyje w innym otoczeniu i inne ma doświadczenia życiowe.Ludzie silna wola i chęć życia-to jest najważniejsze.

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autor: słonko, dodał 2011-06-16 13:26komentuj


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> O 03:08, dnia 2005-05-11 Piotr napisał(-a):

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> [Proszę ten tekst potraktować, jako subiektywną próbę stworzenia podwalin poradnika dla bliskich. Pisałem to wszystko tylko i wyłącznie podstawie własnych doświadczeń z moją chorą dziewczyną Agnieszką i kilku rozmów z chorymi i ich bliskimi - starałem się, żeby było to jak najbardziej uniwersalne. Serdecznie proszę o surową krytykę, uwagi i przede wszystkim o kontynuację, może uda się z tego stworzyć coś pomocnego.]

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>

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>

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> - Postępowanie chorego jest z reguły nielogiczne i nieobliczalne, możesz je odbierać jako skrajnie egoistyczne i niesprawiedliwe. Nie oczekuj "normalnych" reakcji na Twoje starania, zachowań, do których jesteś u bliskiej sobie osoby przyzwyczajony. W trakcie leczenia nic nie jest "normalne". Częściej, niż z podziękowaniami, spotkasz się z zarzutami, którę będą Cię ranić i zniechęcać. Takie zachowanie chorego może wynikać z lęku, strachu przed odrzuceniem - chory woli Cię raczej sam zniechęcić do siebie, niż odczuć Twoje zmęczenie i znużenie jego chorobą.

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> - Nie pozwól choremu na zerwanie kontaktów z przyjaciółmi i otoczeniem. Jeśli dobrze znosi leczenie - niech pracuje, jeśli to niemożliwe - niech dorabia, czyta, rysuje, uczy się grać w szachy, niech robi cokolwiek. Staraj się zapewnić choremu jak najbardziej dla niego normalny tryb życia. Jeśli chory zamyka się w sobie - namawiaj raczej do prowadzenia dziennika, niż wymuszaj rozmowę.

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> - Chory zwykle nie oczekuje od Ciebie zrozumienia ani popisywania się fachową wiedzą - chce raczej, żebyś go wysłuchał, czasem przytulił. Potrzebuje przede wszystkim wsparcia i nienachalnej akceptacji.

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> - Bardzo często chory przestaje akceptować swoje ciało - może unikać twojego dotyku. Przełamuj opór, dotykaj. Nie unikaj seksu, nie zwracaj uwagi na blizny. To dla chorego niesamowicie ważna sprawa.

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> - Nie "zarażaj" się chorobą, nie staraj się być empatyczny, chory szybko wyczuwa fałsz takiego zachowania i oddala się od Ciebie. Nie manifestuj własnych emocji. Nigdy nie pozwól na to, żeby chory odczuł Twoją obecność, jako obciążenie.

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> - Nie unikaj rozmów na tematy ostateczne, ale też nie pozwalaj choremu na zbyt częste roztrząsanie tych tematów. Dbaj o to, by chory nie popadł w różne obsesje. Słuchaj uważnie uwag lekarzy, powtarzaj je choremu własnymi słowami. Pamiętaj reakcje chorego i powołuj się na nie. Jeśli chory popada w religijną, irracjonalną dewocję, poszukaj duchownych , którzy specjalizują się w rozmowach z chorymi (z reguły należących do zakonów). Inaczej w razie niepowodzeń w leczeniu chory może przeżyć głebokie załamanie wiary, które go mocno pognębi.

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> - Nie pozwól sobie wejść na głowę, nie dopuść do sytuacji, w której chory Ci rozkazuje. Staraj się zachować równowagę, spełniaj oczywiste prośby, a nie każdą zachciankę. Jeśli chory każe Ci iść o północy po czekoladę do sklepu, grzecznie odmów, a przy najbliższej okazji kup czekoladę nieproszony.

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> - Choroba bliskiej osoby jest dla Ciebie szalonym wyzwaniem, nie zapomnij o sobie - dbaj o wsparcie ze strony najbliższych, wypróbowanych przyjaciół lub rodziny. Ale też pamiętaj - rozmowa z ludźmi, którz nie zetknęli się z chorobą nowotworową, może być dla nich przytłaczająca - nie oczekuj bezwarunkowego zrozumienia. Ludzie, którzy sami przeżyli chorobę, bądź dotknęła ona ich bliskich, mogą zwyczajnie nie chcieć wracać do bolesnych wspomnień. Nie czuj się odrzucony z tego powodu. Nie zrywaj kontaktu z bliskimi.

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> - Staraj się utrzymywać kontakt z lekarzem prowadzącym, ale nie namawiaj go do przekazywania informacji za plecami chorego. Powinniście słyszeć od lekarza to samo. Jeśli lekarz mówi Ci więcej, niż choremu - nie jest to dobry lekarz. Chory bardzo szybko, intuicyjnie wyczuwa, że wiesz więcej od niego i to budzi w nim szalony niepokój.

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> - Nie pozwól, żeby chory odciął Cię od procesu leczenia, to reakcja obronna - bliska Ci osoba nie chce, żebyś oglądał ją "w takim stanie". Przynajmniej raz na jakiś czas towarzysz choremu w trakcie chemioterapii czy naświetlań - jeśli protestuje uzgodnijcie jakiś kompromis.

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> - W trakcie rozmów nie unikaj słowa "rak", jeśli nowotwór medycznie nie jest rakiem. Tworzysz w ten sposób tabu, które prędzej czy później boleśnie dla chorego naruszy niezbyt delikatny lekarz. Najlepiej używaj słów "nowotwór" i "rak" naprzemiennie, zastrzegając, że "rak" jest pojęciem umownym.

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> - W trakcie wizyty w szpitalu zachowuj się delikatnie, chorzy w sali mogą zachowywać się i wyglądać bardzo dziwnie lub odpychająco. Nie zwracaj uwagi na odgłosy a zwłaszcza na zapachy. Jeśli urazisz jakiegoś chorego swoją uwagą, boleśnie zranisz też osobę, którą się opiekujesz, ona też jest chora "na to samo".

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> - Uważaj na rodzinę chorego - może ona stanowić wielki problem. Rodzina rzadko zachowuje rozsądny dystans, co może być dla chorego wielkim i niepotrzebnym obciążeniem. Nie bój się wkraczać i rozmawiać z rodziną o wszystkim - uświadamiaj im, że chory niekoniecznie musi co tydzień wysłuchiwać, że jest "ukochanym dzieckiem, które umiera". Jeśli jest taka potrzeba, ustal z krewnymi, kto rozmawia z lekarzami. Rodzina bywa nieoceniona przy załatwianiu różnych spraw związanych z leczeniem, pracą, postaraj się, żeby krewni chorego nie byli bezczynni.

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Czytam ten poradnik i tak sobie myślę, że pewnie my - osoby bliskie ziarniakom mamy podobne doświadczenia w przeżywaniu choroby. Zgadzam się z tym, że rodzina może pomóc, ale może też bardzo zaszkodzić. Przede wszystkim - nie wolno płakać przy chorym, narzekać i marudzić, zadawać pytania w stylu: "jak się czujesz", bo takie pytanie usłyszane kilka razy dziennie może dobić. Mój mąż nie chciał, abym odwiedzała go w szpitalu, nie chciał widzieć jak się martwię, ogólnie męczyła go obecność innych ludzi. Ale nie dałam za wygraną, nie pozwoliłam, aby został sam. Początkowo jeździliśmy na na kuracje jednodniowe, później kilkutygodniowe wizyty, teraz - przygotowanie do przeszczepu. Kiedy jest źle warto rozmawiać o rzeczach, które cieszą naszego bliskiego- o jego pasjach, książkach, o tym czy ryby biorą....Kiedy nie ma ochoty rozmawiać - zostawiam go samego i idę na kawę do baru- aby wiedział, że nie chcę się narzucać, ale jestem blisko i mogę być w każdej chwili, czasami warto też pomilczeć razem.

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Jeśli chodzi o znajomych to zazwyczaj oni sami się oddalają, nie chcą słuchać o chorobie, problemach,o śmierci. Zazwyczaj problem rozwiązuje się sam - zostają tylko Ci prawdziwi.

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Przyznaję, że chora osoba jest często nieznośna, czasami apatyczna, czasami złośliwa, agresywna, miewa zachcianki, które ciężko zaspokoić. I kiedy czasami mam dość to sobie myślę - czy ja byłabym lepsza, milsza? Czasem się śmiejemy, że to dzięki ziarnicy mój mężczyzna wie jak czuje się kobieta podczas okresu...Zachcianki spełniam w miarę możliwości, bo kiedy wiem, że przez 3 dni nie ma apetytu i nagle dzwoni, że ma akurat na coś ochotę, zostawiam wszystko i zawożę co trzeba. W domu funkcjonujemy jednak normalnie- nigdy nie dałam mu odczuć, iż uważam, że jest chory - robi wszystko to, co do tej pory.

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I myślę, że warto myśleć o przyszłości, stawiać sobie nietrudne cele, bo to właśnie daje motywację do walki i chęć życia.

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Jakikolwiek poradnik nie powstanie (a jestem za)nie dla każdego się sprawdzi, każda sytuacja choć podobna, to jest jednak inna, ilekolwiek informacji bym nie przeczytała i tak nie jest mi łatwo patrzeć jak najbliższa mi osoba cierpi.

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I jeszcze jedno - nie czytać statystyk, raportów, internetowych bzdur na temat choroby. Cieszyć się z każdego dnia i wierzyć, że choroba jest próbą i jeśli ją pokonamy, jesteśmy w stanie zrobić wszystko.

+1

autor: UFtBudqKwMh, dodał 2012-12-29 03:10komentuj


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Wojciech Kłosowski pisze:O energii lepeij pisać precyzyjnie. Waty i kilowaty są jednostkami MOCY a nie energii. Co do meritum: zasada zachowania energii obowiązuje nadal i nie może jej odwołać ani Towarzystwo Sceptykf3w, ani Towarzystwo Bezkrytycznych Entuzjastf3w: NIE JEST i NIE BĘDZIE możliwe wyprodukowanie większej porcji energii z mniejszej (lub jej rf3wnoważnika w postaci masy). Zimna fuzja jest od lat obiecywanym cudownym źrf3dłem energii. Pamiętamy przynajmniej kilkanaście głośnych pokazf3w, ktf3re kończyły się na ogf3ł przeprosinami, a w trzech przypadkach procesami o zaplanowane oszustwo. Tak więc poczekajmy spokojnie, z ktf3rym przypadkiem zimnej fuzji mamy do czynienia tym razem. Osobiście myślę, że z zimną fuzją sponsorowaną ;)))

+0

autor: Inolek1, dodał 2014-02-28 23:18komentuj


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> O 21:22, dnia 2009-06-17 emi napisał(-a):

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>

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> "A tak poza tym to cieszę się, że jestem chorą, a nie dziewczyną/ siostrą/ dzieckiem chorego - nie chciałabym być na ich miejscu - ciąży na bliskich strach o nas, poczucie bezradności ale i odpowiedzialności za kochaną osobę oraz własne zachowanie - jak pomagać i nie szkodzić "- tak, to prawda jestem matką, której dziecko choruje i moja dusza i ciało "wyje"

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>

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i tu sie zgadzam że łatwiej jest chorować niż kochać kogoś kto sie tak męczy. Dla mnie moja ziarnica to pikuś w porównaniu z tym jak sie czułam kiedy 6 lat temu moja mama miała raka jelita grubego. a teraz widzę jak rodzice podupadli na duchu kiedy dowiedzieli sie o mojej chorobie. aż żal...wszystkim bliskim ziarniaków współczuję bardziej niż Wam drogie ziarenka

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autor: 3DS5gRjT, dodał 2015-08-08 10:43komentuj


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OTRO RESENTIDO SOCIAL MAS! Te apuesto a que no vives ni en el corunty ni en la lagunita? Publica la direccion del cerro donde vives, si eres patriota de verdad y seras chavista leal! jajajaj

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autor: Pierrot, dodał 2015-08-21 18:07komentuj


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> O 03:08, dnia 2005-05-11 Piotr napisał(-a):

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> [Proszę ten tekst potraktować, jako subiektywną próbę stworzenia podwalin poradnika dla bliskich. Pisałem to wszystko tylko i wyłącznie podstawie własnych doświadczeń z moją chorą dziewczyną Agnieszką i kilku rozmów z chorymi i ich bliskimi - starałem się, żeby było to jak najbardziej uniwersalne. Serdecznie proszę o surową krytykę, uwagi i przede wszystkim o kontynuację, może uda się z tego stworzyć coś pomocnego.]

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>

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>

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> - Postępowanie chorego jest z reguły nielogiczne i nieobliczalne, możesz je odbierać jako skrajnie egoistyczne i niesprawiedliwe. Nie oczekuj "normalnych" reakcji na Twoje starania, zachowań, do których jesteś u bliskiej sobie osoby przyzwyczajony. W trakcie leczenia nic nie jest "normalne". Częściej, niż z podziękowaniami, spotkasz się z zarzutami, którę będą Cię ranić i zniechęcać. Takie zachowanie chorego może wynikać z lęku, strachu przed odrzuceniem - chory woli Cię raczej sam zniechęcić do siebie, niż odczuć Twoje zmęczenie i znużenie jego chorobą.

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> - Nie pozwól choremu na zerwanie kontaktów z przyjaciółmi i otoczeniem. Jeśli dobrze znosi leczenie - niech pracuje, jeśli to niemożliwe - niech dorabia, czyta, rysuje, uczy się grać w szachy, niech robi cokolwiek. Staraj się zapewnić choremu jak najbardziej dla niego normalny tryb życia. Jeśli chory zamyka się w sobie - namawiaj raczej do prowadzenia dziennika, niż wymuszaj rozmowę.

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> - Chory zwykle nie oczekuje od Ciebie zrozumienia ani popisywania się fachową wiedzą - chce raczej, żebyś go wysłuchał, czasem przytulił. Potrzebuje przede wszystkim wsparcia i nienachalnej akceptacji.

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> - Bardzo często chory przestaje akceptować swoje ciało - może unikać twojego dotyku. Przełamuj opór, dotykaj. Nie unikaj seksu, nie zwracaj uwagi na blizny. To dla chorego niesamowicie ważna sprawa.

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> - Nie "zarażaj" się chorobą, nie staraj się być empatyczny, chory szybko wyczuwa fałsz takiego zachowania i oddala się od Ciebie. Nie manifestuj własnych emocji. Nigdy nie pozwól na to, żeby chory odczuł Twoją obecność, jako obciążenie.

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> - Nie unikaj rozmów na tematy ostateczne, ale też nie pozwalaj choremu na zbyt częste roztrząsanie tych tematów. Dbaj o to, by chory nie popadł w różne obsesje. Słuchaj uważnie uwag lekarzy, powtarzaj je choremu własnymi słowami. Pamiętaj reakcje chorego i powołuj się na nie. Jeśli chory popada w religijną, irracjonalną dewocję, poszukaj duchownych , którzy specjalizują się w rozmowach z chorymi (z reguły należących do zakonów). Inaczej w razie niepowodzeń w leczeniu chory może przeżyć głebokie załamanie wiary, które go mocno pognębi.

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> - Nie pozwól sobie wejść na głowę, nie dopuść do sytuacji, w której chory Ci rozkazuje. Staraj się zachować równowagę, spełniaj oczywiste prośby, a nie każdą zachciankę. Jeśli chory każe Ci iść o północy po czekoladę do sklepu, grzecznie odmów, a przy najbliższej okazji kup czekoladę nieproszony.

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> - Choroba bliskiej osoby jest dla Ciebie szalonym wyzwaniem, nie zapomnij o sobie - dbaj o wsparcie ze strony najbliższych, wypróbowanych przyjaciół lub rodziny. Ale też pamiętaj - rozmowa z ludźmi, którz nie zetknęli się z chorobą nowotworową, może być dla nich przytłaczająca - nie oczekuj bezwarunkowego zrozumienia. Ludzie, którzy sami przeżyli chorobę, bądź dotknęła ona ich bliskich, mogą zwyczajnie nie chcieć wracać do bolesnych wspomnień. Nie czuj się odrzucony z tego powodu. Nie zrywaj kontaktu z bliskimi.

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> - Staraj się utrzymywać kontakt z lekarzem prowadzącym, ale nie namawiaj go do przekazywania informacji za plecami chorego. Powinniście słyszeć od lekarza to samo. Jeśli lekarz mówi Ci więcej, niż choremu - nie jest to dobry lekarz. Chory bardzo szybko, intuicyjnie wyczuwa, że wiesz więcej od niego i to budzi w nim szalony niepokój.

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> - Nie pozwól, żeby chory odciął Cię od procesu leczenia, to reakcja obronna - bliska Ci osoba nie chce, żebyś oglądał ją "w takim stanie". Przynajmniej raz na jakiś czas towarzysz choremu w trakcie chemioterapii czy naświetlań - jeśli protestuje uzgodnijcie jakiś kompromis.

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> - W trakcie rozmów nie unikaj słowa "rak", jeśli nowotwór medycznie nie jest rakiem. Tworzysz w ten sposób tabu, które prędzej czy później boleśnie dla chorego naruszy niezbyt delikatny lekarz. Najlepiej używaj słów "nowotwór" i "rak" naprzemiennie, zastrzegając, że "rak" jest pojęciem umownym.

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> - W trakcie wizyty w szpitalu zachowuj się delikatnie, chorzy w sali mogą zachowywać się i wyglądać bardzo dziwnie lub odpychająco. Nie zwracaj uwagi na odgłosy a zwłaszcza na zapachy. Jeśli urazisz jakiegoś chorego swoją uwagą, boleśnie zranisz też osobę, którą się opiekujesz, ona też jest chora "na to samo".

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> - Uważaj na rodzinę chorego - może ona stanowić wielki problem. Rodzina rzadko zachowuje rozsądny dystans, co może być dla chorego wielkim i niepotrzebnym obciążeniem. Nie bój się wkraczać i rozmawiać z rodziną o wszystkim - uświadamiaj im, że chory niekoniecznie musi co tydzień wysłuchiwać, że jest "ukochanym dzieckiem, które umiera". Jeśli jest taka potrzeba, ustal z krewnymi, kto rozmawia z lekarzami. Rodzina bywa nieoceniona przy załatwianiu różnych spraw związanych z leczeniem, pracą, postaraj się, żeby krewni chorego nie byli bezczynni.

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>

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Witam! Właśnie się zarejestrowałem, mam siostrę chorą na ziarnicę, chociaż ona akurat nie zajmuje się forami tego typu. Woli jeździć konno i grać w gry komputerowe. Co do jej zachowania, to zawsze była histeryczna i roszczeniowa, po leczeniu (chemia, promieniowanie) tylko trochę jej się to nasiliło. Osobiście pomyślałem sobie, że stres i nieprawidłowe podejście do życia sprzyja rozwojowi wszystkich typów nowotworów. Niestety, trudno walczyć z negatywnym myśleniem.

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autor: pNrhisWZ, dodał 2015-11-23 02:01komentuj


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Heckuva good job. I sure aptrceiape it.

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autor: PuTM76Yn6, dodał 2015-11-23 04:08komentuj


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Back in school, I'm doing so much lenirang.

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Wypowiedzi na forum dyskusyjnym zawierają indywidualne zdanie ich autorów, jeśli nie zgadzasz się z czymś - masz pełne prawo do wypowiadania się. Każdy autor odpowiada za swoje odpowiedzi. Forum dyskusyjne w serwisie ziarnica.pl nie jest miejscem pozwalającym na diagnozy medyczne, może pomóc rozwiać Twoje wątpliwości jednak nie zastąpi fizycznego kontaktu z lekarzem - jeśli masz jakiekolwiek wątpliwości to zanotuj je i skonsultuj ze swoim lekarzem prowadzącym.
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