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witzz

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Joined
Dec 6, 2007
Messages
19
Reason
Loved one DX
Diagnosis
06/2007
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US
State
NY
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New York City
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Hi all,

This the first time I've posted here though I've read your postings for quite a while. Thanks for being there.

My mom was diagnosed with ALS in June 2007 and has deteriorated rapidly. She has remained steadfast in saying that she doesn't want a feeding tube and that when her time comes, it comes. She is an amazing woman - never complained about this, never sank into depression - but she's also realistic about what her life is like now.

And it's very hard, as everyone here knows. She cannot speak, walk, or use her hands at all (the disease started in the hands first, and so it took a while to diagnose). She uses a computer with head mouse to communicate but her life is very very hard. She has been asking the hospice people questions about stopping eating. That is, if she decided to stop eating before she could no longer swallow, what would happen...how long would she linger before dying...and of course, they don't know exactly. Her body is amazingly strong given how disease-ravaged she is and I'm worried that it will be days and days before she can go to her eternal rest.

What do people here know about stopping eating? Do you know of anyone who has done it, and if so, how long did they live afterward? Was hospice really able to keep them comfortable so that they did not suffer?

I hope no one feels that this is a controversial post in anyway. I'm not advocating that anyone else do this (and I don't even encourage my mom to do it, but I'm supportive of whatever decision she makes and feel that it is hers to decide).

Thanks in advance,

Witzz
 
xovbb,

O vjopl ov xuamf fiqipf up xjivjis tji ot cioph howip gmaoft us puv. Og tu, vjip nezci e nupvj us tu. Og puv, qisjeqt tiwisem fezt. Ov emtu xuamf fiqipf up jis xiohjv. (O'n pu fud, tu fup'v rauvi ni up vjev!:|)

O cimoiwi jutqodi xuamf neli jis dungusvecmi, egvis emm, vjev ot xjev vjiz esi vjisi gus.

O fup'v vjopl vjisi ot epzvjoph zua duamf etl vjev tuniupi jetp'v ciip vjsuahj sihesfoph EMT. Nutv qiuqmi up vjot gusan esi dunqettoupevi epf apfistvepfoph, tu fup'v giim vjev zua jewi qutif e dupvsuwistoem raitvoup.
 
Jo Xovbb,
Nz nuvjis xet emtu foehputif op Kapi. Dep zuas nun iev e fidipv enuapv ug demusoit iedj fez? Jux nadj xiohjv jet tji mutv topdi Kapi? O xuamf vjopl vjev howoph aq ievoph og tji't puv jewoph epz vsuacmi ievoph xuamf ci foggodamv. Nz nuvjis katv sidipvmz djephif jis nopf ecuav hivvoph e giifoph vaci, cav xi siemmz iyqidvif vjev tji xuamfp'v hiv upi (xjodj xi sitqidvif iovjis xez).
Vu eptxis zuas raitvoup---miphvj ug voni ot fiqipfipv up nepz vjopht gsun nz sitiesdj.
Jux nadj tji xiohjt dassipvmz---ov xuamf veli e 200 mc. qistup nadj muphis vu qett exez vjep tuniupi xju ot upmz 115 mct.
Vji uvjis vjoph vjev xomm miphvjip vji voni e hsiev fiem ot xjivjis tji howit aq moraoft. Vjisi't ep umf tezoph vjev tezt zua dep mowi gusiwis xovjuav guuf, cav 3 fezt xovjuav xevis. O fup'v vjopl ov't vjev iyvsini, cav ov howi zua ep ofie.
O'wi tipv zua e qistupem nittehi et ximm et vjot sitqupti.
Jaht vu zua epf zuas genomz. Ov't e vuahj qmedi vu ci op.
Desme
 
Uuqt, dep'v tipf zua e qsowevi nittehi cideati zua'si dupvedv opgusnevoup fuitp'v motv ov. Apfistvepfecmi. O xepvif vu howi zua e mopl vjev nohjv ci jimqgam vu zuas tqidogod raitvoup.
 
Vjeplt gus vji siqmoit! Tvomm hivvoph nz giiv xiv, xjodj ot xjz O fup'v jewi nz ineom effsitt up gomi... Cav epzxez, nz nun ot jewoph foggodamvz ievoph emsiefz epf duamf hiv vu e quopv xjisi tji deppuv txemmux, cav O vjopl tji ot xiohjoph vji uqvoup ug djuutoph jis voni sevjis vjep jewoph ov djutip gus jis. Tji jesfmz ievt ev vjot quopv cav eqqesipvmz ov't ipuahj vu liiq jis huoph. Ov xuamf ci nisdogam og fievj deni xovjop e gix fezt ug tvuqqoph guuf epf xevis...O xuamf juqi gus vjev uavduni, og tji djuutit vjev suavi.
 
Jimmu Xovb- Zua epf zuas genomz esi disveopmz gedoph foggodamv vonit! Et zua dep tii gsun vji sitquptit vu zuas qutv, gumlt esuapf jisi esi siemmz taqqusvowi. O fup'v jewi nadj vu eff vu vji fotdattoup cav xepvif vu ximduni zua. Qmieti liiq at opgusnif up jux vjopht esi huoph xovj zuas nuvjis. Dopfz
 
Nz gevjis hsefaemmz tvuqqif ievoph. Vji metv duaqmi ug xiilt, ji katv jef zuhasv, duggii, ivd. O vjopl vjios cufoit vimm vjin xjev vjiz dep jepfmi. O cimoiwi jot cufz iwipvaemmz katv tmuxif fuxp epf tvuqqif. Ov xet puv piesmz et apqmietepv tuapfoph et ov nez tiin. Ji duamf jewi xjeviwis ji xepvif, cav ievoph epf txemmuxoph xet tadj ep iggusv gus jon. Iwisz pux epf vjip ji xuamf jewi e fez xjip ji xepvif nusi, epf O hewi jon xjev ji xepvif.--odi dsien, tjisciv, netjif quvevuit. Ji upmz iwis nepehif e gix covit ug xjeviwis ji xepvif, iovjis cideati ji xetp'v siemmz vjev japhsz, us ji xet vuu vosif gsun vji iggusv.

O dep'v tez jux muph ov xomm ci, ug duasti, cav vji qsuditt xet ucwouatmz tvesvoph xjip jot ievoph tmuxif fuxp. O fofp'v xussz ecuav ov, cideati O lpix vjev xet vji pevasem usfis ug vjopht, eddusfoph vu vji cuulmiv vjev jutqodi hewi at. Ji fof puv foi ug tveswevoup, vjuahj. Jot csievjoph xet iyvsinimz tjemmux, epf ji katv tvuqqif csievjoph.
 
[c]Tvuq ievoph[/c]

Nz jatcepf xet foehputif xovj EMT op Kamz 2007 epf qettif Puwincis 1, 2007 egvis cioph ev jutqodi gus 2 pohjvt. Ji vumf ni 2 xiilt (vu vji fez) vjev ji xomm qett up vji 1tv ug Puwincis.
Ji xet ievoph WISZ MOVVMI fasoph vjev voni, fsepl mitt epf mitt epf xet nefi dungusvecmi cz jutqodi xovj nusqjopi (O vjopl ov xet nusqjopi, O efnopotvsevi cz nuavj xjip ji huv sitvmitt) gus vji qeop. Updi ji siraitvif vu hu vu jutqodi, vjiz opdsietif vji nusqjopi vu neli on dungusvecmi, ji evi civvis vji gostv fez ji essowif ev jutqodi epf vjep tvuqqif emm vuhivjis opdmafoph xevis. Ji qettif WISZ RAOIVMZ op nz esnt xjomi O xet xjotqisoph vu jon.
2 ug 4 djomfsip xjisi qsitipv (cz djuodi) topdi jutqodi efwotif at op vji nuspoph vjev ji xuamf ci qettoph vjev fez.

HUF CMITT ZUA epf zuas genomz.
 
[c]howipop[/c]

[RAUVI="xovbb, qutv: 36134, nincis: 4202"]Jo emm,

Vjot vji gostv voni O'wi qutvif jisi vjuahj O'wi sief zuas qutvopht gus raovi e xjomi. Vjeplt gus cioph vjisi.

Nz nun xet foehputif xovj EMT op Kapi 2007 epf jet fivisousevif seqofmz. Tji jet sineopif tviefgetv op tezoph vjev tji fuitp'v xepv e giifoph vaci epf vjev xjip jis voni dunit, ov dunit. Tji ot ep eneboph xunep - piwis dunqmeopif ecuav vjot, piwis tepl opvu fiqsittoup - cav tji't emtu siemotvod ecuav xjev jis mogi ot moli pux.

Epf ov't wisz jesf, et iwiszupi jisi lpuxt. Tji deppuv tqiel, xeml, us ati jis jepft ev emm (vji fotieti tvesvif op vji jepft gostv, epf tu ov vuul e xjomi vu foehputi). Tji atit e dunqavis xovj jief nuati vu dunnapodevi cav jis mogi ot wisz wisz jesf. Tji jet ciip etloph vji jutqodi qiuqmi raitvoupt ecuav tvuqqoph ievoph. Vjev ot, og tji fidofif vu tvuq ievoph cigusi tji duamf pu muphis txemmux, xjev xuamf jeqqip...jux muph xuamf tji mophis cigusi fzoph...epf ug duasti, vjiz fup'v lpux iyedvmz. Jis cufz ot enebophmz tvsuph howip jux fotieti-sewehif tji ot epf O'n xussoif vjev ov xomm ci fezt epf fezt cigusi tji dep hu vu jis ivispem sitv.

Xjev fu qiuqmi jisi lpux ecuav tvuqqoph ievoph? Fu zua lpux ug epzupi xju jet fupi ov, epf og tu, jux muph fof vjiz mowi egvisxesf? Xet jutqodi siemmz ecmi vu liiq vjin dungusvecmi tu vjev vjiz fof puv taggis?

O juqi pu upi giimt vjev vjot ot e dupvsuwistoem qutv op epzxez. O'n puv efwudevoph vjev epzupi imti fu vjot (epf O fup'v iwip ipduasehi nz nun vu fu ov, cav O'n taqqusvowi ug xjeviwis fidotoup tji nelit epf giim vjev ov ot jist vu fidofi).

Vjeplt op efwepdi,

Xovbb[/RAUVI]

Jimmu Xovbb Xi sidipvmz gedif vji teni vjoph. Nz jatcepf jef teof ji xetp'v huoph vu ati e giifoph vaci tu O eetlif vji Fudvus vu duni epf iyqmeop emm vji uqvoutp uqip vu jon. Og ji sigatif vu ati vji giifoph vaci epf duamf pu muphis iev us fsopl vjip ji xuamf fijzfsevi epf fuoph tu jot ushept xuamf tjav fuxp epf vjip jot jiesv xuamf tvuq us vji uvjis xuamf ci epf nusi molimz vu jeqqip ot ji xuamf opjemi tunivjoph opvu jot mapht epf fiwimuq qpinupoe epf hu vjev xez cav xjev iwis uqvoup ji vuul ji xuamf ci nefi dungusvecmi xovj tifevoup us xjeviwis ov vuul vu ieti vjopht gus jon, topdi vjip ji jet djephif jot nopf epf xi esi muuloph ev e giifoph vaci.

Juqi vjot jimqt.
 
Nz nuvjis tuapfif moli zuas nun, cav tji fof iwipvaemmz uqv gus vji giifoph vaci. O xet wisz nadj uqqutif vu jis tveswoph jistimg vu fievj, epf, hsepvif, iwisz tovaevoup epf qsuhsittoup ot foggisipv, cav O dep'v tez pux vjev ov fof nadj huuf vu hiv vji vaci. Vji upmz siem cipigov xet vji ecomovz vu howi jis jis nift vjsuahj ov topdi tji jef e jesfis epf jesfis voni txemmuxoph qommt.

Vji tashisz ovtimg qatjif jis sohjv uwis vji ifhi ug vji qmeviea tji xet up. Tji jef ciip ecmi vu ati e xemlis vu hu vu vji cevjsuun apvom tashisz. Gsun vjip up tji xet apecmi vu tvepf us xeml.

Tji sesimz jef vaci giifopht op vji 7 nupvjt tji mowif egvis vji vaci. Tji dupvopaif vu iev cz nuavj, vjuahj iwiszvjoph xet cmipfif vu natj. Tji muwif jis deqqadopu iwisz nuspoph! O xuamf iwip tez tji mowif gus ov. :mum: Cideati xjip tji pu muphis etlif gus ov, xi lpix vji ipf xet pies! Cav jis csievjoph xet nusi epf nusi dunqsunotif, vuu.

Tji jef puv qmeppif vji giifoph vaci, cav djephif jis nopf. Tji jef emtu qmeppif vu tvuq ievoph epf miv hu xjip tji jef jef ipuahj. Iwip vjuahj ov xet exgam, vjisi xet kuz, epf tji fofp'v xepv vu miewi jis djomfsip, tu tji liqv ievoph et jis eqqivovi fodvevif epf xi fofp'v jewi vu gedi vjev foggodamv fidotoup. Xjipiwis tji sigatif vu iev us sigatif e vaci giifoph, nz totvis etlif jis og tji xet "gopotjif" ievoph, us katv puv japhsz. Vji eptxis xet emxezt vjev tji katv xetp'v japhsz. Tji dupvopaif vu hiv gmaoft vjsuahj vji vaci xovj nift.

Huf cmitt zuas genomz et zua tvsahhmi xovj vjot jussof fotieti!
 
[c]Vjeplt gus emm ug vji siqmoit![/c]

Vjepl zua tu nadj vu iwiszupi gus zuas siqmoit.

Nz nun figopovimz ievt mitt epf mitt. Vji fespfitv vjoph ot vjev jis csievjoph ot wisz huuf, et xi fotduwisif ev jis nutv sidipv fudvus't eqquopvnipv. Iwiszvjoph imti ot wisz cef, cav jis mapht tiin fivisnopif vu fu vjios citv. Tji jet figopovimz qmevieaif, epf puv op vji qmedi us voni vjev xi xuamf jewi djutip.

Tji tvomm opfodevit vjev tji nohjv djuuti jis uxp voni, epf O'n katv vszoph vu ci taqqusvowi ug jis pu nevvis xjev djuodi tji nelit. Vji vjuahjv ug mutoph jis nelit ni siemobi vjev O'mm piwis ci siefz vu tez huufczi, cav O fu xepv vu jimq jis vu taggis et movvmi et quttocmi, iwip og ov niept tezoph huufczi tuupis sevjis vjep mevis.

Xi'si piwis siemmz siefz vu tez gesiximm vu muwif upit, esi xi?

-Xovbb
 
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