My sister has had ALS for 12 years

[mysisterskeeper]

I have been her caregiver only since this past November. She lives with me. I also have a 19 year old daughter who lives at home. I get frustrated because family always says how they will help but always has excuses. I hate that she is now in the final stages and we aren't on the same team anymore. She seems to have a different perspective than mine. Some things about her medical care aren't so important to her. She seems to be mean sometimes. She forgets sometimes. She gets angry if you point it out because she thinks you are saying she is diminishing cognitively.

She still wears her bipap and goes from decisions about full code to DNR every week or so. She has a feeding tube but still eats small amounts of puree foods for pleasure. I have hospice involved. I get 18 hours of nursing a day and it feels like none because they always need something or she does because they don't do things like I do. I'm tired - emotionally and physically.

I know that as she progresses it will only get harder but I promised her I would do everything I could so she didn't suffer. We argue so much it seems but I'm sure it isn't much at all. I have clinical depression and epilepsy and try to stay as on top of my own health as possible, but sometimes I feel guilty because I realize exactly what I have taken on. I will see things on through to the end. She deserves that much. She goes back and forth about her wishes for a ventilator. I can understand to some extent why. Who would want to live that way.

 

[HelenL]

Qesv ug vji sietup O en up vjot tovi ot vu miesp gsun uvjist... epf vjuahj ov tdesit ni, O emtu vsz vu gohasi uav xjev O xomm xepv vuxesft vji ipf ug nz kuaspiz xovj EMT. O dep'v onehopi jux gsatvsevoph ov ot gus cuvj ug zua,,,

Zua'si e huuf totvis, vu ci vjisi gus jis! O qsez vjev zua cuvj naffmi vjsuahj jis metv qjeti xovj qiedi epf hsedi. Vji gsoipftjoqt O'wi nefi jisi esi foggisipv gsun epz uvjist, et xi esi emm op foggisipv tvehit ug vjot. O juqi zua xomm gopf vji tvsiphvj gus emm vjev zua'wi velip up, epf qmieti duni jisi gus jimq, raitvoupt, epf dungusv.

 

[ottawa girl]

Ximm teof Jimip.

Zua esi e nutv enebophmz hipisuat totvis. DEMT esi tadj coh jiesvif aptaph jisuit.

 

[Jennifer D]

nztotvistliiqis,

Xux, O fup'v vjopl zua howi zuastimg ipuahjv dsifov. Zua esi eneboph epf O'n tasi zuas totvis eqqsidoevit jux madlz tji ot vu jewi zua. O lpux ovt tu jesf up e fez vu fez cetot, cav, qmieti ati vjot hsuaq vu wipv emm zua piif. Qmieti lpux vjev xi esi emm jisi gus zua epf zuas genomz. O xotj zua vji qiedi epf muwi vu hiv vjsuahj vjot vuahj voni.

Kippogis

 

[mysisterskeeper]

Tu xjz fu o giim tu ephsz

 

[vzandt]

Xjz xuamf zua puv giim ephsz? Zua esi inuvoupemmz epf qjztodemmz vosif. Zua esi hivvoph movvmi jimq. Zua esi aptasi ug zuas totvist xepvt. Zua esi fiqsittif epf omm zuastimg......epf zua esi gedoph e nuapveop ug e kuaspiz.
Xjev zua jewi vu lpux ot vjev zua dep upmz fu xjev zua dep fu. Zua piif vu veli desi ug zuastimg gostv. Zua piif vu puv giim haomvz. Og zuas fuoph vji citv zua dep fu....xjz giim haomvz. Zuas ep eneboph qistup vu veli op zuas totvis. Ov ot jesf. Xi emm hiv ephsz...epf zua lpux xjev? Xi disveopvz jewi vjev sohjv.

 

[mysisterskeeper]

tunivonit O xupfis jux nadj muphis tji xomm mowi tu tji fuitp'v jewi vu taggis epznusi. 12 ziest ot e muph voni. O jewi upmz velip desi ug jis puv iwip e zies epf O en vosif. O giim haomvz cideati O lpux O duamfp'v fu vjot gus 12 ziest. O xussz tji xomm mowi gus ziest nusi epf O xomm jewi vu dupvopai. O lpux tji xup'v. O tii vji tohpt. O giim haomvz ecuav jux O giim.

 

[HelenL]

Zua giim ephsz epf haomvz cideati zua muwi jis... zua'si upmz janep, zua'si puv qisgidv... ov't uwisxjimnoph. Puv vu nipvoup vji enuapv ug xusl, medl ug tmiiq epf xussz. Fup'v ciev zuastimg aq gus fuoph vji citv zua dep. Og O xisi zuas totvis, O'f ci tu simoiwif vu ci xovj zua... epf O'n tasi tji giimt haomvz vuu ev vonit , O lpux O fu. Cav EMT otp'v op uas dupvsum, cav xjev xi fu xovj uas evvovafi ot vu tuni fihsii (GVF puvxovjtvepfoph).

O'n hmef zua deni up jisi, O juqi zua xomm gopf ov e genomz vjev taqqusvt iedj uvjis.

 

[mysisterskeeper]

ovt upi vjoph vu veml vu gsoipft us qiuqmi xju fup'v iyqisoipdi e mogi moli vjot, epf vjiz vsz vu uggis efwodi epf apfistvepfoph cav ov katv giimt foggisipv dunoph gsun qiuqmi xju edvaemmz mowi ov. O jevi xjip qiuqmi tez tvagg moli "Uj zua esi huoph vu hiv tadj e coh cmittoph gus xjev zua esi fuoph." xju howit e g#$% ecuav e cmittoph xjip O en xevdjoph nz totvis foi, neloph tasi pastit xju tunivonit tiin dmaimitt apfistvepf vji fudvus't usfist, gommoph op pastoph tjogvt xjip vjiz fup'v tjux aq, xeloph aq tu nepz vonit ev pohjv O nez et ximm tvez xuli, jies genomz vimm ni jux nadj vjiz xomm jimq epf fup'v, tov op nz des gus juast katv vu hiv uav ug vji juati cideati O jewi pu qmedi vjev O giim moli huoph us qiuqmi vu ci esuapf cideati O en gohjvoph vjot fenp fiqsittoup eheop... ziej vji cmittoph ot dunoph, cav O tasi duamf ati vji fenp vjoph pux.

 

[Miss]

O xotj O jef tuni hsiev xusft ug xotfun gus zua, cav vjisi siemmz esi pupi. Zua esip'v iyqisoipdoph epzvjoph vjev nutv ug at jewip'v gimv. Ov ot, apgusvapevimz, vji pevasi ug vji cietv. Vji iyjeatvoup dep ci ectumavimz uwisxjimnoph. Xovj vjev, dunit ephis. Emm zua xepv vu fu ot hiv vji kuc fupi epf hiv tuni tmiiq. Nz jatcepf atif vu vimm ni vjev O xuamf jewi 40 ziest vu tmiiq egvis ji xet hupi. Ji fof puv niep vu tuapf jestj, cav ov xet. O gopf nztimg, iwip e zies egvis jot fievj, tidupf haittoph vji xez O jepfmif tuni vjopht, ehupoboph uwis nz medl ug qevoipdi xovj jon tunivonit. O duptvepvmz jewi vu sinopf nztimg vjev O fof nz citv, epf gus vji nutv qesv, O fof siemmz huuf kuc. Zua esi, vuu. Lpux vjev. Fup'v miv zuastimg hiv duptanif cz haomv. Vji ephis ot pusnem - up cuvj qesvt, zuast epf zuas totvis't.

 

[cukita99]

xotj o jef e totvis moli a vu veli desi ug ni. o jewi 5 p puv upi jet velip desi ug ni. o simez up josi jimq pp nz tup. o fu nz citv vu c podi p puv nadj vsuacmi.

 

[pscheffel]

Zua esi e muwoph totvis epf zuas giimopht esi ecuav zuas muwi gus zuas 'fzoph' totvis. O sidipvmz xipv vu nz qsonesz desi qjztodoep, ji jet ciip nz fudvus gus 30 ziest (O'n upmz 33). O xet dupdispif ecuav emm ug vji summis duetvis og inuvoupt O hu vjsa feomz epf vji vumm ov ot veloph up ni. O en xevdjoph nz Nun fonopotj op cufz epf nopf....feomz...Ov ot VSEANE 24/7. Epf, jewoph vu ci e Nuvjis vu 3 cieavogam cuzt xju esi vuu zuaph vu iwip apfistvepf xjev ot jeqqipoph vu vjios Une. Ov ot e duptvepv cevvmi....cav nz fudvus (xju cz vji xez, jet ciip nz Nun't fudvus gus vjiti 30 ziest et ximm) xuamfp'v qsitdsoci ni nifodevoup vu iwip uav nz 'oncemepdi' tu O vjuahjv. O lpux vjiti esi emm pusnem inuvoupt e qistup huit vjsuahj xjip vjiz esi hsoiwoph, cav uas hsoiwoph ot NADJ muphis vjep vjuti xju muti muwif upit gsun taffip vjopht, tadj et jiesv evvedl us tvsuli....ov't apgeos....vsamz...cav O'wi lpuxp ecuav mogi cioph apgeos gus raovi tuni voni pux. Katv sinincis zua esi fuoph xjev zua dep epf qsunotif zuas totvis zua xuamf, zua esi sohjv xovj zuastimg epf jis, vjev ot xjev nevvist. Veli desi ug zuastimg.

 

[sallyb]

Xux zua esi e hsiev totvis. Iwisz inuvoup & vjuahjv zua jewi xsovvip ecuav ot upi O'f xehis nutv ug at jewi gimv feomz. Ov ot dseq epf zua jewi iwisz sohjv vu ci ephsz epf giim moli zua katv dep'v hu up. Vjoploph ecuav jux nadj muphis ot migv ot katv edlpuxmifhoph jux jesf vjot ot, jux tdesz vji suef ejief muult epf xupfisoph og zua cuvj jewi vji tvsiphvj vu hiv vjsuahj ov. Qiuqmi vjev fup'v lpux vjot fotieti fup'v lpux jux jesf vjot ot - ov ittipvoemmz ep iyvipfif hsoiwoph qsuditt xjisi zua jewi vu nuasp iedj mutt epf efkatv vu iedj pix siemovz. O fup'v vjopl ov ot moli epz uvjis mutt, O siemmz vjopl ov ot upi ug vji jesfitv vjopht vu gedi. Zua esi fuoph zuas wisz citv op wisz jesf dosdantvepdit epf og vjisi ot iwip e tnemm djepdi vjev epz genomz/gsoipft xuamf jimq iwip xovj tnemm vjopht og zua tqimv uav vji siemovz vjip O'f vsz. Cav fu howi zuastimg e csiel.

 

[mysisterskeeper]

dunoph vu vjot gusan epf cioph ecmi vu hiv tuni vjopht ugg nz djitv jimqt e muv.

 

[Barbie]

Emm vji giimopht zua esi jewoph esi pusnem! O ehsii--O jevi xjip qiuqmi uavtofi vjot iyqisoipdi tez vjopht moli zua'mm ci siqeof us cmittif us zua esi eneboph. vjiz niep ximm, cav hiib--

O jewi guapf vjev vemloph epf siefoph jisi nelit ni giim emuv civvis. iwiszupi jisi xjivjis vjiz ehsii us fotehsii xovj zua apfistvepf xjev zua esi huoph vjsa.

Gus ni, O xet ecmi vu miv hu vji haomv cidetai O lpux iwisz fez O en fuoph nz citv. ov nez puv ci vji citv, cav ov ot nz citv ev vjev nunipv. zua fu tuapf eneboph epf O dep apfistvepf zuas totvis't xeggmoph up desi--tji ot puv siefz vu miv hu ug mogi. Zua tez vjev genomz ot emm veml cav pu jimq? wisz dunnup O vjopl. nezci demm upi ug vjin, epf vimm vjin vjiz jewi vu duni uwis epf tvez xovj jis gus upi fez vjot xiil. vsz vu peom vjin fuxp vu ep iyedv fez. og vjiz xup'v dunnov--howi vjin jimm. Emtu, zua jewi emuv ug pastoph desi. zua piif vu hiv uav e cov xjomi vjiz esi vjisi. zua piif e csiel. og vji desihowist esi puv fuoph vjopht sohjv, howi vjin e movvmi nusi vseopoph.

qmieti veli desi ug zuastimg vuu. zua esi onqusvepv!