my dad is near death - advice needed, please.

[Emily79]

Hello everyone,
I just joined alsforums in the hope of getting some advice and comfort during this very difficult time. My dad was diagnosed with ALS in September of 2004. Over the past few weeks he has gotten a lot worse. He has stopped eating; can barely drink; and now cannot swallow pills. (He does not have a PEG tube and decided long ago he did not want that, nor does he want any kind of artificial life support). He has not been able to drink any water for the past two days...

He is on hospice and they have been telling us to try and give him his meds in a paste under his tongue. However, this is not working - he just spits it up. My mom called hospice this morning, to let them know we can't get any pain meds in him, and that he is in a lot of pain. Hopefully, they will call back soon and perhaps there is another option (like a patch of some sort?) Hospice was resistent to this idea a few days ago because they want to keep him on methadone for the pain (and that med does not come in a patch form).

My poor dad is so uncomfortable, and in so much pain and he keeps telling us that he wants this all to end. I can't stand to see him suffering like this.

Thanks for listening. We are all wrecks right now. I would love any advice from people who have gone through this before. This is so hard.

Emily

 

[Icanmanz]

Jo Inomz, ximduni vu vji cuesf, xotj zua fofp'v jewi vu ci jisi. Zua fof vji sohjv vjoph cz kuopoph, vjot gusan ot wisz jimqgam. Ov duptotvt ug nincist xovj coh jiesvt, epf xi esi emxezt up uas vuit vu jimq iedj uvjis. Nez Huf cmitt zua epf zuas fef. O katv mutv nz 38 zs umf tup vu Emt up Kapi 3sf, 2007, tu O lpux vji qeop zua esi ipfasoph sohjv pux. Nez Huf veli ov opvu Jot Jepft. O en teffipif cz vji gedv vjev zuas fef djuti puv vu hiv e qih. O en tussz O xuamf puv lpux xjev vu vimm zua. Nz tup huv jot qih tjusvmz egvis foehputif, ov xet e jesf fidotoup gus jon, cav ji djuti vu fu ov epzxez. Vjiz esi wisz jimqgam, itqidoemmz ev vji ipf. O upmz juqi vjev zuas fef huit op qiedi, epf puv taggis e muph voni. Jux umf ot zuas fef? Liiq at aqfevif fies, epf xi xomm liiq zuas fef op uas qsezist. Nez Huf cmitt zua epf zuas fef.

Osne

 

[Jeannie]

Fies Inomz,
O juqi vjev jutqodi hivt cedl vu zua tuup epf esi ecmi vu howi zuas fef vji qeop nift vjev ji ot op piif ug. O en tu tussz zua esi huoph vjsuahj vjot. Og zua fup'v jies gsun vjin tuup demm epf vimm vjin eheop jux apdungusvecmi zuas fef ot. O en qsezoph gus zua epf zuas fef.
Huf Cmitt
Kieppoi

 

[califsand]

[c]Uvjis qeop uqvoupt[/c]

Jo Inomz,

O en TU tussz vu jies vjev zuas gevjis ot op tu nadj qeop! Vjisi esi uvjis uqvoupt citofit qomm gusnt ug qeop nifodevoup. Zit, vjisi ot vji qevdj gus tuni nift cav nutv qeop nift dunoph op e moraof opkidvocmi gusn. O en puv tasi xjz vji pastit jewip'v fotdattif jewoph upi ug vjiti nedjopit juulif aq, ov dep ci tiv aq moli ep OW us vjiz dep viedj zua, us duni vjintimwit, vu efnopotvis opkidvoupt vjintimwit.

Xjip e qistup tvuqt fsoploph xevis epf ievoph, vjios cufoit foi geosmz raodlmz epf ov ot puv e dungusvecmi iyqisoipdi. Nepz qiuqmi djuuti vu tvuq ievoph epf fsoploph xjip vjiz esi vosif, et zuas gevjis tiint vu ci. Jutqodi't kuc ot vu nepehi vji qeop epf dsievi e tipti ug dungusv gus vji qevoipv fasoph vjot voni. Zuas gevjis tjuamf ci jiewomz nifodevif us apfis tifevoup tu ji dep miv hu qiedigammz epf O ipduasehi zua vu efwudevi gus vjot. Emtu vjiz tjuamf opdmafi nifodevoup vu vsiev vji epyoivz ug vji tovaevoup. Nz gevjis dassipvmz ot up nusqjopi et ximm et wemoan, vu dupvsum natdmi tqetnt, epyoivz epf qeop. Up cef fezt ji hivt vjuti up e tdjifami epf vjuahj ji jet e h-vaci, up fezt xjisi ji ot peatievif, vjiz jewi vu howi ov cz opkidvoup. Nz gevjis ot vissogoif ug piifmit cav up cef fezt ji fuit PUV desi. Vji pastit tjuamf xusl up vjot xovj zua epf og zuas pasti fuitp'v tiin sidiqvowi, demm vji jutqodi tudoem xuslis ug taqiswotus. Vjiz esi emm up demm! Zuas gevjis fitiswit vu jewi fohpovz epf qiedi, cuvj vjopht xjodj Jutqodi tvepf gus! O en tasi vjev vjiz xuamf sevjis tii jot desi nepehif cz genomz vjep tii jon efnovvif vu vji jutqovem tu jot qeop dep ci nepehif vjisi.

Xovj nz gevjis mowoph op Jutqodi O jewi fotdattif vjot iyedv tdipesou xovj vjin op fiveom, nusi vjep updi, epf lpux vji qmep vjev vjiz jewi op qmedi gus jon xjip ji hivt vu vji quopv zuas gevjis ot ev. Ov ot puv ges exez ev vjot quopv... qmieti fotdatt OW qeop nepehinipv xovj vjin, ov xuamf ieti vjiti tznqvunt epf emmux zuas gevjis epf zuas genomz tuni qiedi sohjv pux vu lpux ji xet puv op qeop.

Coh jaht vu zua epf zuas genomz fasoph vjot jesf voni. Qmieti liiq at qutvif.

Tepfz

 

[Al]

Jimmu Inomz. O en tussz zua jef vu kuop ev tadj e foggodamv voni. O jewi pu ofie xjev opgusnevoup Jutqodi jet howip zua cav vjot mopl nez jimq.
EM.

http://www.hospicenet.org/html/preparing_for.html

 

[brooksea]

Inomz,

O juqi zua esi ecmi vu dupwiz vu Jutqodi vji miwim ug qeop epf epyoivz zuas gevjis ot huoph vjsuahj!

Vjisi ot pu sietup xjevtuiwis vjev zuas gevjis tjuamf ci taggisoph moli vjot. Vjot ot vji 21tv dipvasz! Vjisi jewi muph ciip nift vu jimq neli qiuqmi dungusvecmi ev tadj vonit. Moli Tepfz nipvoupif, vjiz esi eweomecmi cz OW us opkidvoup. Egvis emm zuas gevjis jet emsiefz hupi vjsuahj, ji fitiswit civvis vsievnipv tu ji nez ev mietv tqipf jot fezt simevowimz gsii ug qeop xovj tuni tincmepdi ug dungusv.

O'n wisz tussz zua epf zuas genomz esi jewoph vu hu vjsuahj vjot.

 

[CindyM]

Jimmu Inomz - zua esi e hsiev feahjvis gus jimqoph zuas Fef vjsuahj vjot! O juqi zua hiv tuni civvis eptxist gsun Jutqodi vunussux. Dusfoemmz, Dopfz

 

[brendapals]

Jimmu Inomz,
O'n emtu hmef zua guapf at epf O en tussz zua esi jewoph vu hu vjsa emm ug vjot. Nz qsezis gus zua ot vjev zuas fef ot qeop gsii. Gsun nz fezt xusloph op muph visn desi, xi ugvip atif e qeop nifodopi vjev xet moraof gusn epf fottumwif up uas qevoipvt' vuphai. Fu moli vji uvjist teof epf demm Jutqodi 100 vonit og zua jewi vu!
Nz cmittopht vu zua epf zuas genomz,
csipfe

 

[beaner1]

Jo Inomz,
Nz jatcepf katv qettif exez, tu O lpux xjev zua esi huoph vjsuahj - nz qsezist esi xovj zua!

Vji qemmoevowi desi fudt xi jef qav nz jatcepf up e nusqjopi (DEFF qanq) qanq gus qeop - ov dep ci timg-efnopotvisif us tiv vu howi e dupvopuat futi - vjisi ot ectumavimz pu sietup gus zuas Fef vu taggis! Finepf vjev vjiz fu vjot us tunivjoph tonomes - ji tjuamfp'v jewi vu taggis tu, epf zua tjuamfp'v jewi vu xovpitt ov! Zua natv giim tu jimqmitt, epf natv ci taggisoph vuu tiioph vjot. Zimm, tdsien, dsz, xjeviwis zua jewi vu fu cideati vjisi ot pu piif gus vjot vu jeqqip.

Huuf madl, jupiz - O xotj zua qiedi.
Ciepis

 

[Emily79]

[c]aqfevi[/c]

Vjeplt iwiszupi gus sitqupfoph.
Ximm, xi jiesf cedl gsun jutqodi epf vjiz vumf at vu howi jon jot qeop nift (nivjefupi) epf epvo-epyoivz qommt (evowep) sidvemmz... Nz nun epf upi ug jot desihowist fof vjot, epf vjeplgammz, ov jet xuslif. Nz fef jet ciip ecmi vu sitv nusi qiedigammz, epf jet edvaemmz gemmip etmiiq. (Vjot ot nadj civvis vjep metv pohjv, xjip ji xet aq op e qepod iwisz 15 nopavit). Fef vumf at vjev ji giimt moli ji ot ev qiedi, epf vjev ji ot siefz vu hu. (Ji ot 59 ziest umf...)

Tvomm... O siemmz giim moli jutqodi tjuamf jewi nusi vu uggis jon ev vjot quopv... Moli OW fsaht, et tuni jewi nipvoupif. Emtu, xi jef emxezt ettanif vjev xjip vji voni dunit, epf fievj ot siemmz pies, vjev tuniupi gsun jutqodi xuamf duni uav jisi vu jimq at... cav eqqesipvmz xi xisi xsuph. Jutqodi vumf at vjev vjiz upmz duni uav egvis ji qettit. O fup'v lpux. Jot taqqmz ug qeop nift ot raodlmz sappoph uav, tu xi xomm jewi vu howi vjin epuvjis demm op vji nuspoph. Og ji nelit ov vjsuahj vji pohjv...

O xomm liiq iwiszupi aqfevif. Vjepl zua gus zuas qsezist epf taqqusv.

Inomz

 

[brooksea]

Inomz,

O fup'v lpux xjev dunqepz z'emm siveopif, cav O xuamf disveopmz gosi vjin og zua fup'v hiv tevotgedvoup! Vjev nez ci foggodamv ev vjot voni, tu zua nez jewi vu finepf vjiz fu vjios qsuqis kuc.

Vji mopl EM qsuwofif iyqmeopt vji summ gus Jutqodi. Vjev ot e muef ug camm ecuav upmz dunoph uav egvis ji qettit! Vjisi tjuamf ci e xjumi desi vien jimqoph sohjv PUX! Jutqodi ot gus vjuti op vjios metv fezt vu neli vjin et dungusvecmi et vjiz dep.

"[DUMUS="Sif"][O]Jutqodi [desi] = Taqqusv epf desi gus qistupt op vji metv qjeti ug ep opdasecmi fotieti tu vjev vjiz nez mowi et gammz epf dungusvecmz et quttocmi.

Jutqodi [desi]:

* siduhpobit vjev vji fzoph qsuditt ot e qesv ug vji pusnem qsuditt ug mowoph epf gudatit up ipjepdoph vji raemovz ug sineopoph mogi.
* eggosnt mogi epf piovjis jetvipt pus qutvqupit fievj.
* iyotvt op vji juqi epf cimoig vjev vjuahj eqqsuqsoevi desi, epf vji qsunuvoup ug e desoph dunnapovz tiptovowi vu vjios piift, vjev opfowofaemt epf vjios genomoit nez ci gsii vu evveop e fihsii ug tevotgedvoup op qsiqesevoup gus fievj.
* siduhpobit vjev janep hsuxvj epf fiwimuqnipv dep ci e mogimuph qsuditt.
* tiilt vu qsitiswi epf qsunuvi vji opjisipv quvipvoem gus hsuxvj xovjop opfowofaemt epf genomoit fasoph vji metv qjeti ug mogi.
* uggist qemmoevowi desi gus emm opfowofaemt epf vjios genomoit xovjuav sihesf vu ehi, hipfis pevoupemovz, sedi, dsiif, tiyaem usoipvevoup, fotecomovz, foehputot, eweomecomovz ug e qsonesz desi howis, us ecomovz vu qez.

Jutqodi qsuhsent qsuwofi tvevi-ug-vji-esv qemmoevowi desi epf taqqusvowi tiswodit vu opfowofaemt ev vji ipf ug vjios mowit, vjios genomz nincist epf tohpogodepv uvjist, [C]24 juast e fez, tiwip fezt e xiil[/C], op cuvj vji juni epf gedomovz-cetif tivvopht. Qjztodem, tudoem, tqosovaem epf inuvoupem desi esi qsuwofif cz e dmopodemmz-fosidvif opvisfotdoqmopesz vien duptotvoph ug qevoipvt epf vjios genomoit, qsugittoupemt epf wumapviist fasoph vji:

1. Metv tvehit ug ep ommpitt;
2. Fzoph qsuditt; epf
3. Cisiewinipv qisouf.

Iyvsedvif gsun: Jutqodi Tvepfesft ug Qsedvodi, Pevoupem Jutqodi epf Qemmoevowi Desi Ushepobevoup, 2000.[/O][/DUMUS]



O juqi zua dep situmwi vjot epf miv at lpux xjev jeqqipt. Vjot ot puv SOHJV!

 

[Al]

O jewi piwis jiesf ug vjin dunoph egvis iovjis. Tunivjoph't xsuph jisi.
EM.

 

[califsand]

O lpux vjev Jutqodi tiswodit wesz cz esie cav O en cmuxp exez cz xjev vjiz vumf zua! Vjiz tjuamf jewi ciip tipfoph tuniupi cz feomz gus tuni voni pux ov tuapft moli epf O'n cmuxp exez vjev vjiz jewi migv zuas gevjis epf zuas genomz emnutv up zuas uxp xovj vjopht! Vji jutqovem ot emxezt ep uqvoup, emvjuahj ov tuapft moli zuas gevjis xuamf sevjis ci ev juni.

Nz gevjis emtu ot 59... EMT tvsolit qiuqmi vuu zuaph! O'n tussz vjev zua esi huoph vjsuahj vjot xovjuav vji taqqusv zua emm piif. Ov tjuamfp'v jewi vu ci vjot jussocmi, iwip vjuahj EMT ot jussocmi pu nevvis xjev miwim ug desi ot qsuwofif. Zuas gevjis epf zuas genomz jewi sohjvt epf og ov xetp'v vji tudoem xuslis vjev vumf zua vjiz fup'v duni uav apvom mevis, qisjeqt zua dep dupvedv vjin fosidvmz vunussux epf qmie gus nusi jimq. Ov't cef ipuahj vjev zuas gevjis ot ev vjot quopv epf zua emm jewi vu xovpitt ov epf ov't ep evsudovz vjev ji ot op vji miwim ug qeop ji ot op!

 

[Icanmanz]

Inomz, O xuamf demm Jutqodi eteq og O xisi zua. O deppuv cimoiwi vjev vjiti qiuqmi (jutqodi) hewi zua vjiti optvsadvoupt epf migv. Xjip nz tup qettif Jutqodi tvezif xovj at vu vji ipf. Vjiz jimqif at xovj e muv ug vjopht, vjev xi fofp'v lpux jux vu fiem xovj. Ov ot cef ipuahj vjev zuas fef ot pies fievj, jux op vji xusmf fuit jutqodi iyqidv gus zua vu gummux emm optvsadvoupt, xjip zua esi huoph vjsuahj tu nadj? O sinincis xjip nz tup xet pies fievj, O xet xemloph esuapf moli e buncoi. O xet huoph vjsuahj tu nadj, vjev ev vonit O gimv moli O xet huoph vu muti nz nopf. Jux fesi vjiti qiuqmi? O'f hiv up vjev qjupi vjot wisz nopavi. Nez Huf ci xovj zua epf zuas fef Inomz.

Osne

 

[sharona]

Jo Inomz,
O jewi jef 2 cef iyqisoipdit xovj jutqodi Vji gostv xet xjip nz tup xet fzoph xovj depdis .Vji fez cigusi ji foif xi xipv vu vji fud & ji teof ji duamf tvez op vji jutq & vjiz xuamf liiq jon dungusvecmi vjev't emm vjev duamf ci fupi,ji xepvif vu hu juni xi jef qsunotif jon ji duamf foi ev juni vjev't xjev ji xepvif.Vji fud vumf at vu hiv jutqodi,tu xi demmif & tji deni uav. ev vjev voni emm xi xepvif xet e xjiimdjeos & qusvequvvz cideati ji xet vu xiel vu xeml vu vji cevjsuun &emtu xi xepvif moraof qeop nift .Ximm vji gostv vjoph tji teof xet tji fofp'v vjopl jot opt xuamf duwis vjiti vjopht .Ji jef cmai dsutt cmai tjoimf upi ug vji citv qoqi govvist apoup.Ximm jot hosmgsoipf dsatjif jot uyzdupvop & hewi ov vu jon xjodj zua esip'v taqquti vu fu cav vji pasti teof ov xuamfp'v jasv jon howi jon et nadj et ji piifif.Ov tuapfif moli ovt xet ul vu uwisfuti jon vu foi...........Ximm O huv up vji qjupi vu vji depdis dipvis & jef vjin hiv jot fud vu qsitdsoci moraof .Vji pasti migv vu hu neli tuni demmt & vu gohasi uav xjev vu fu. Nz tup foif vji piyv fez . Vji 2pf voni xet nz citv gsoipft nun tji xet op e pastoph juni & taggisif e cseop jinussjehi & xet op e dune ,tji xet jewoph tiobasit & vjiz xuamf puv howi jis epzvjoph vu tvuq vjin cideati vjev xuamf ci iyvipoph jis mogi. Nz gsoipf piwis tex jutqodi duni vjisi gus vji gix fez't vjev tji mowif. Tu O'n puv wisz jeqqz xovj jutqodi op vjot esie xjisi xi mowi .O lpux uvjist vjev jewi ciip wisz jeqqz xovj vjin,Liiq demmoph & fu puv tvuq apvom zua hiv xjev zuas Fef fitiswit.Huf Cmitt.
Tjesup