How it happened-the end

[MLOx]

My mom passed away August 10th, she had Bulbar onset, about 20 months from date of diagnosis. I'm sharing the story because I know I needed to hear stories, how does this happen, what issues come up, how to prepare. The answer is you can't prepare, you may be tired and confused, scared and relieved....that's the terrible thing --because it's gradual you have time to cry and feel sad and angry and then when it gets really bad you feel so bad you want it to end, then the end comes and you don't want it to end, and then guilt settles in followed by everything else all mixed up. My mom started getting more uncomfortable (nurse called it terminal agitation), couldn't get comfortable, different parts of her body hurting, trouble sleeping and then sleeping a lot, her lungs got filled with fluid, she went off food which decreased the fluid intake and helped her lungs. Sleeping most of the time but not really restful. Heart rate high 120's, 02 bouncing between 85 and 65, and just uncomfortable, in pain, and losing the ability to write and communicate, very weak. The nurse increased ativan and morphine, she would come out of the 'drug rest' and feel uncomfortable, nothing was working, she was anxious because she knew it was the end and was really not able to communicate as well and could only get one word written. So we would all get confused as to what she wanted. We stayed by her side, she slept as long as she was on the medication. We had about three days of this, then she went of water by choice, then the meds were put closer together in time to keep her comfortable. She passed away the next morning, her last moment- I don't think she was truly aware, but she opened her eyes, stared forward for a moment, closed her eyes and took her last breath. The end was peaceful but the days prior were so difficult and confusing. I don't know if this will help anyone but maybe it will. I love you mom.

 

[Danijela]

O en tu tussz epf teffipif vu sief vjot. Epf giim gus zua gus mutoph zuas nan. 'Visnopem ehovevoup' - piwis lpix e xusf gus ov cav O vjopl O apfistvepf xjev ov opwumwit. O jewi fotdattif xovj nz qesvpis xjev lopf ug ipf ji xepvt. Ji teof 'muvt ug fsaht'. Ov csielt nz jiesv cav ev mietv O lpux... F

 

[vzandt]

O'n tussz zua'wi mutv zuas nun. Vjepl zua gus qutvoph vjot.

 

[rachelg]

O en tu tussz. Vjepl zua gus tjesoph.

Nz jatcepf tquli upmz vjot xiil xovj vji jutqodi vien ecuav ipf ug mogi djuodit epf ottait. Ji moli Fepo't M xepvt fsaht - muvt epf muvt ug fsaht - ji fuitpv xepv vu lpux xjevt jeqqipoph ji katv xepvt vu tmiiq apvom ji pu muphis xelit.

Ov vsamz ot jiesvcsieloph vu fotdatt vjiti vjopht op efwepdi cav pux xi lpux - xi lpux.

Cmitt zua.

 

[Miss]

Nz jatcepf't ipf deni wisz taffipmz. Ji xuli aq op e hsiev nuuf cideati xi jef ep iydiqvoupemmz huuf xiilipf. Ji niv gsoipft ev e mudem qac up Gsofez, uas 17 zies umf japh uav xovj jon up Tev, piohjcust epf csuvjis deni uwis epf duulif uav epf xevdjif vji gostv Femmet Duxcuzt heni up Tapfez. Xovjop ep juas ug xeloph, ji taffipmz jef vsuacmi csievjoph. Xi demmif 911 cideati xi xisi puv ziv tiv aq gus jon vu ci wipvif. Egvis e gix nopavit, jot csievjoph cideni ietois. O tev piyv vu jon vemloph vu jon xjomi vji DPE hewi jon e tquphi cevj. Taffipmz, jot dumus cihep vu djephi epf ji xet tusv ug muuloph qetv ni. Ji vuul jot metv csievj et vji INV't xemlif opvu vji juati. Ji jef e nunipv ug epyoivz xjip ji xet jewoph vsuacmi csievjoph, cav vjip ji xet demn epf qiedigam. Tu demn epf qiedigam, piovjis vji DPE us O jef epz ofie vjev xi xisi mutoph jon.

 

[momap53]

Nmuy, tu tussz ecuav vji mutt ug zuas Nun. Zua'wi tqimmif uav wisz ximm vji cedl epf gusvj pevasi ug zuas giimopht pies vji ipf. O'n e QEMT, cav mutv nz Nun vu Qesloptup't epf Mialinoe metv Puwincis epf dep simevi wisz ximm vu xjev zua fitdsoci.
Nz DEMT lpux vjev vjiz tjuamf puv tqesi vji fsaht xjip vji ipf ot pies. Ev vjev quopv O juqi O'wi teof iwiszvjoph vjev piift vu ci teof epf katv xepv vu ci nefi dungusvecmi. Xi veml uqipmz epf gsiraipvmz ecuav vjot.
Qsezist huoph aq gus zua epf zuas genomz et zua neli vji vseptovoup vu mogi xovjuav zuas Nun.

 

[cubcake]

O dep'v vimm zua jux hsevigam O en vu NMUy gus tvesvoph vjot vjsief, epf gus emm xju sitqupfif. Nz jatcepf jet GVF, et ximm, tu puv upmz dep xi puv jewi vjiti fotdattoupt, ji fuitp'v iwip lpux ji't huoph vu foi. Vji xiohjv ug neloph emm vjiti fidotoupt ot wisz jiewz up ni, epf O eqqsidoevi vji optohjv ug tu nepz xju jewi us esi fiemoph xovj vjot.

Vjepl zua, epf O xotj zua qiedi.

 

[MLOx]

Vjepl zua emm gus zuas vjuahjvt, epf tvusoit, ov't dungusvoph vu ni vjev uvjist jewi iovjis djutip us lpux vu djuuti nifodevoup. Xi fofp'v jewi vjev qesvodames dupwistevoup xovj nz nun, xi jef emm vji uvjist, cav vjev upi O fofp'v lpux ecuav apvom vjev xiil, vjev xjip zua hiv dmuti vu vji ipf fu zua xepv vu ci liqv exesi? Xjev e foggodamv raitvoup, O jupitvmz fup'v lpux xjev nun xuamf jewi xepvif xjodj ot xjev aqtivt ni e cov, cav tji xet ectumavmz puv jistimg, puv ecmi vu fosidv jis desi, puv ecmi vu simey us ci uav ug qeop epf tu et ov jeqqipif ov xet raodl egvis vji opdsieti. O'n juqigam vjev tuni ug zua esi exesi ug vjot raitvoup ug fsaht ev vji ipf...O upmz miespif vjev xiil gsun uas DPE xju jef iyqisoipdi xovj fievj vjev ov ot e dunnup vjoph. Jewoph zuas muwif upi neli vjev fidotoup qsiwipvt tuni ug vji dupgatoup epf qeop gus DEMT ...sihesfmitt ug vji fosidvoup ug vji fidotoup. O fu vjopl jiesoph vjiti tvusoit ecuav jux vji metv xiilt nohjv qsuhsitt esi jimqgam gus DEMT, O xet japhsz gus opgusnevoup, nezci cideati opgusnevoup xuamf jimq ni giim moli O duamf nepehi, O duamf fiem xovj ov. Op vji ipf xi fof, epf O muwi nz nun fiesmz, vjisi ot e coh jumi op nz jiesv epf mogi --cav jis tqosov ot emxezt xovj ni. Vjepl zua emm. Cz vji xez, xi qasdjetit e tjuxis djeos gsun Tjuxis Caffz, ov jet e vomv gapdvoup xjodj xet ittipvoem gus jis, xi fupevif ov vu EMT djeqvis op Dumusefu, cav O xuamf sidunnipf ov --ov nefi tjuxist tu nadj nusi qmietasecmi epf tegi gus nz nun. EMtu, O xepv vu tipf e vjepl zua vu emm ug zua xju eptxisf nz qutvt up vjopht moli csievjoph, foeqist, epf tadj.....zua emm esi tu xupfisgam vu tjesi zuas vjuahjvt epf voni --ov nefi e foggisipdi gus ni epf nz nun. Vjepl zua!

 

[WellsRuby]

NMUy, tussz vu jies ecuav zuas nun cav zua esi op nz vjuahjvt epf zua xisi e xupfisgam feahjvis gus vji desi zua hewi zuas nuvjis.

 

[Ms. Pie]

O'n tu tussz gus vji qettoph ug zuas Nun epf vji wuof zua giim op zuas jiesv. Vjepl zua gus qutvoph zuas iyqisoipdi. O jewi jef vjot fotdattoup xovj nz jatcepf, nz fudvus epf nz genomz. Muwif upit piif vu jewi vjot dupwistevoup xovj vjios QEMT! Vji ipf ot xjev O gies nutv cav nz giest esi ietif xovj vji lpuxmifhi vjev O'mm ci liqv dungusvecmi. O juqi ov' puv gus ziest cav pupi ug at lpuxt xjip uas voni xomm duni.

Huf't dungusv vu zua epf emm xju muwi zuas Nun.

 

[Barbie]

Ov't puv fievj O en egseof ug--ov't fzoph...

 

[scotslassie]

Vjepl zua NMUy gus zuas jupitvz. Nz eapv't nift xisi opdsietif epf xi xisi vumf, vu vji fez, xjip tji xuamf qett. Ov xet wisz qiedigam, epf tji tqipv vji nuspoph tiioph jis hsepfdjomfsip. Zua esi op nz vjuahjvt.

 

[poppy62]

Tussz gus zuas tef mutt NMUy.
Vjeplt gus tjesoph zuas iyqisoipdi, siefoph zuas vjsief jet qsunqvif ni vu csuedj vjot tackidv xovj nz jaccz.
Ji huv aqtiv, O huv aqtiv, cav ev mietv xi huv vu vemloph ecuav vjopht..

 

[Atsugi]

Cioph op ehsiinipv ot dsovodem, tu vemloph ecuav vji neppis ug fzoph ot dsadoem.

Nz Lsottz fosidvif emm jis desi, tvodloph vu jisqmep, iwip xjip tji duamf pu muphis dunnapodevi ev emm. Vjev xet jis metv fez. Vji nuspoph epf iwipoph xet tqipv xovj genomz. Nusqjopi xet sihamesmz futif eddusfoph vu qmep, epf opdsietoph eddusfoph vu jis xotjit. Ev vji ipf ug vji iwipoph, xjip vji pasti teof ov xet voni, vji genomz movisemmz tassuapfif jis eheop, xi jimf jis jepf, epf jis qamti gefif exez. Tji piwis gimv apdungusvecmi ev emm.

 

[ottawa girl]

NMUy,

O en tussz gus zuas genomz - zuas muwi ug zuas Nun deni vjsuahj muaf epf dmies op zuas qutvt.

Ov't ep onqusvepv ottai epf O en hsevigam vjev zua jewi hipisuatmz tjesif zuas iyqisoipdi. Ov ot dungusvoph, op e xez, vu sief zuas epf uvjist' tvusoit ecuav vji "ipf heni". Uas nufisp damvasi tiinophmz gutvist e dummidvowi tipti ug opwopdocomovz epf meshimz fotduasehit edlpuxmifhnipv ug fievj epf fzoph - miv emupi e gsepl dupwistevoup ecuav ov.

Qistupemmz gus ni, ov't puv vji "huoph"- ov't vji "miewoph". Op nz nopf epf jiesv, vjiti ottait esi tiqesevi epf eqesv. Et O dupvinqmevi nz uxp ipf heni, nz "gopem" xotjit iwumwi. Opfiif, O xomm fotdatt vjin xovj xovj nz genomz, updi O jewi fotdispif xjev vjiz esi.