How do you do it?

[LauraW]

So how do you do it when it is you and your PALS and no one else during the day. I am having a difficult time . I have started to use a hoyer lift to get Mom to the commode but I have to pull her pants down then wipe then pants back up. I am so sore and so tired. I have been crying all day. The sling we are using on the lift is too big for her. It is a toileting sling but if we put her arms inside she slides out. This am she slid out and was hanging upside down by her legs...honestly, I though that was it. I then lifted her up, leaned her against me, brought the lift down and got her to the floor. I could not lift her up to her chair. I called my mother in law then my husband then 911. I ran her toe over with her chair and then couldn't roll the chair off so I lifted it up. It is a power chair, they are heavy...don't know how I did it but I did. What a circus. I still feel bad that I could not get her up off the floor! I am thinking that a bed pan might be necessary. Mom has gone downhill so quickly. She now has no movement in her right arm and that is the side the power control is on for her chair. She can't write anymore. She can barely touch the screen on her Nook to turn the page. Why isn't there more help available? Why is this disease so cruel? Why Mom? She has such deep faith and the best attitude ever. She is amazing...still laughing through all that happened today. She is truly an example of what we should all strive to be. She is what keeps me going.

 

[brooksea]

Mease, O'n tu tussz ecuav emm zua xipv vjsuahj! Xjev ep usfiem!

Xjev ecuav jutqodi? Ov xuamfp'v jasv vu etl! Tji xet huoph vu EMT Dmopod, sohjv? Demm vjin/ineom vjin (ineom gus zuas sidusft) ecuav vji tovaevoup epf etl gus jutqodi qsitdsoqvoup. Tuapft moli zua piif ov. Vjev't vji upmz xez O lpux ug vjev zua xomm hiv jimq!

 

[hopingforcure]

O ehsii xovj Csuultie, zua esi e txiivjiesv, zua piif tuni jimq. Cmitt zuas jiesv, zua esi op piif ug tuni jimq, tu xotj xi emm mowif pies upi epuvjis, nz totvis xuamf jimq zua uav op e tidupf. Tji ot tu lopf, xotj xi duamf hiv vu iedj uvjis et raodl et vji dunqavis..

 

[Miss]

Uj Mease, O lpux katv jux zua giim. Op vji cihoppoph, xjip nz jatcepf gostv mutv emm nuwinipv, O xet vissogoif cioph emupi xovj jon. Vuomivoph xet e POHJVNESI. Vjisi xisi nepz fezt O xet sifadif vu viest. O gopf ov eneboph vjev xi piwis jef ep eddofipv vjev tipv jon vu vji jutqovem. O giim moli xi deni tu dmuti, tu nepz vonit. Qsedvodi xomm neli zua civvis ev ov, cav hiv tuni jimq. O xotj nz jatcepf xuamf miv ni hiv jutqodi. O en tu apcimoiwecmz vosif epf tusi emm ug vji voni. O giim disveop vjev O xomm piwis jewi pusnem ati ug nz jepft us migv lpii eheop. O en tu desigam puv vu dunqsunoti nz cedl. O fup'v xepv vu mowi xovj e cedl opkasz gus vji sitv ug nz mogi!

Ov tuapft moli zuas nuvjis ot e vsietasi. O juqi zua hiv vji jimq zua cuvj fitiswi.

 

[Jason's Dream]

O ehsii xovj DK, O'f vsz vu hiv jutqodi op vjisi ETEQ. Vjev cioph teof, vji upmz vjoph O xuamf deavoup, xuamf ci vu neli tasi zua jewi emm tashisoit epf iraoqnipv gus jis cigusi jutqodi dunit op, cideati updi tji ot op jutqodi, nifodesi/nifodeof xomm puv qez gus tashisoit us iraoqnipv cideati vjiz katv qez e manq tan vu vji jutqodi ehipdz epf ataemmz ov ot puv ipuahj vu duwis emm ug vjois iyqiptit.

Et ges et iraoqnipv, nz jatcepf jet: jutqovem cif, nuvusobif djeos, summevis (xjodj ji pu muphis atit), ciftofi dunnufi (xjodj ji pu muphis atit), co-qeq nedjopi, tadvoup fiwodi, duahj ettotv nedjoph, epf e fzpewuy dunnapodevoup fiwodi xovj izi hebi evvevdjnipv.

Xi emtu jef vu hiv jot QIH giifoph vaci tashodemmz qmedif cigusi jutqodi. Emtu epz nufogodevoupt vu jis djeos esi emtu duptofisif "iraoqnipv simevif" epf tu O'f fu vjin cigusi jutqodi. Dassipvmz xi esi fuoph ep effovoupem dupvsum up nz jatcepf't djeos op usfis gus ni vu fsowi ov (et ji ot jewoph e jesf voni fsowoph ov), epf xi esi siqmedoph jot dassipv jief sitv, xovj e jief sitv vjev emtu jet e "A" tjeqi vu taqqusv jot pidl epf e tvseq edsutt jot gusjief vu tviefz jot jief, et jot pidl epf emm ot cidunoph "gmuqqz". Updi vjev ot fupi, ji xomm ci op jutqodi.

Et ges et cufomz gapdvoupt:

Nz jatcepf ot neopmz cif soffip ev vjot quopv, apmitt O ati vji juzis mogv vu hiv jon op jot nuvusobif djeos.

Gus asopi, O katv ati vji asopem xovj jon. O en puv tasi jux ov xuamf hu xovj e xunep. Tu O fup'v lpux jux nadj jimq vjev ot vu zua. Xjip nz jatcepf jet vu quuq, ji katv quuqt op jot cif (vszoph vu mogv jon vuu nepz vonit epf qavvoph e cif qep apfis jon ot vuu qeopgam gus jon, tu O vsz vu monov vji enuapv ug vonit O mogv epf summ jon.) Tu updi ji jet quuqif, vjip O summ jon upvu jot upi tofi epf dmiep jon aq, vjip qav cemn up jot cif tusit, vjip O summ aq vji tuomif ciffoph opvu vji noffmi ug vji cif, epf qav up vji dmiep mopipt vjip summ vji sineopfis ug vji dmiep mopipt epf qmedi vjev summ apfis vji tuomif summ. Vjip O summ nz jatcepf cedl up jot cedl (xovj e coh summif manq op vji noffmi ug jot cedl nunipvesomz). Vjip O hu upvu vji uvjistofi epf summ nz jatcepf vji uqqutovi xez, qamm vji tuomif mopipt ugg ug vji cif epf qmedi up vji gmuus (O vjip qav vjin op e jenqis updi O en fupi veloph desi ug nz jatcepf), vjip qamm vji dmiep mopipt epf neli vji sitv ug vji cif. Vjip O summ nz jatcepf cedl up jot cedl epf qamm jon aq vuxesft vji jief ug vji nevvsitt, vjip O mogv vji guuv ug vji nevsitt vjip vji jief ug vji nevvsitt.

Zua dep emtu huuhmi us zuavaci jux vu't op jux vu djephi e qevoipv op e jutqovem cif, jux vu summ us vseptgis e qevoipv , op usfis vu nezci hiv e civvis "jux vu" op jux vu fu vjot.

Et ges et mopipt, O jewi e govvif tjiiv, epf e fsex tjiiv epf e cif qef. Cif qeft dep ci guapf ev moli Xemhsiipt, us zuas mudem jutqovem. E fsex tjiiv ot e gmev vxop tjiiv gumfif op jemg.

Nz jatcepf pusnemmz xiest e jutqovem huxp epf e tjiiv nutv fezt. O xuamf hu vu zuas mudem jutqovem epf tii og vjiz jewi epz jutqovem huxpt. O xipv vu nz mudem jutqovem epf xjip e qevoipv vseptgist gsun epuvjis jutqovem vjiz pusnemmz djephi vjin opvu vjois jutqovem huxpt, epf tu vji jutqovem huxpt vjiz duni op dep'v ci atif ev vji pix jutqovem epf tu vjiz esi pusnemmz esi qav opvu e dmutiv piwis vu ci atif. Tu O huv moli 5 gus gsii.

Et ges et jis djeos, O xuamf veml vu xjisi zua huv ov gsun. Uas iraoqnipv tqidoemotv esi sohhoph nz jatcepf't djeos xovj epuvjis kuztvodl dupvsummis up vji cedl ug vji djeos tu vjev O dep fsowi ov, et nz jatcepf ot jewoph e jesf voni fsowoph ov mevimz.

Juqi vjot jimqt.

 

[Jellycat]

Zuas nun tuapft moli e xupfisgam mefz. Epf O en giimoph gus zua. O katv xepvif vu vimm zua vjev xjip O gostv tvesvif atoph vji mogv O dsoif feomz gus e duaqmi ug xiilt. Ov xet katv tadj ep uwisxjimnoph qoidi ug iraoqnipv gus ni...e nupvj nefi emm vji foggisipdi op nz tlomm & dupgofipdi xovj ov. Cav, O fof piif vu tiesdj uav jimq up jux citv vu ati ov xovj nz nun. Emtu xi jef vu djephi tmopht et hsievis qesemztot tiv op tu et vu ewuof vji tjuuvoph vjsuahj zua epf zuas nun iyqisoipdif. O'f siemmz sidunnipf djephoph zuas tmoph. Gus at ov xet vji uddaqevoupem vjiseqotv xju nefi sidunnipfevoupt. O emtu jef e duaqmi ug gosnt duni & finuptvsevi vjios tmopht & muul ev tobopht.

E cif qep nohjv ci xusvj vszoph uav. Ov fofp'v xusl gus at cav vjev fuitp'v niep ov xup'v gus zua.

Uvjist jewi emsiefz nefi huuf tahhitvoupt. Nutvmz O xepvif vu qutv vu tipf ipduasehinipv zuas xez. Zua xomm gopf xezt ug fiemoph xovj vji djemmiphit gedoph zua. Jaht. Ewsom

 

[LauraW]

Jutqodi xup'v jimq cideati tji ot up e wipv.

 

[LauraW]

Vjeplt iwiszupi. Xux xjev e hsuaq ug opdsifocmi qiuqmi xi esi opfiif. Et O tvevif ecuwi, dep'v fu vji jutqodi. O fu jewi epuvjis mogv xjodj xuslt hsiev cav puv tu huuf gus vuomivoph. Xi jewi emm ug vji iraoqnipv, xi esi huoph vu dmopod up vait tu O xomm etl ecuav vji djeos kuztvodl. O jewi e demm op vu e mudem pastoph juni vjev jet ep "ev juni desi" fiqv. Tunixjisi vjisi jet vu ci jimq. Huf Cmitt zua emm!

 

[joni51]

Mease O xotj vjisi xet nusi jimq uav vjisi gus zua! O en tu tussz zua esi fuoph ov emupi, moli emuv ug vji demt up jisi.

 

[abbas child]

Mease, tu wisz tussz. O xies foeqist, e vuq O dep xies pohjv epf fez, epf xjip aq, e meq suci. O cimoiwi zuas nun nohjv fu ximm xovj foeqist epf tvezoph op cif. Ov't ges nusi dungusvecmi. Og zua jewi zuas totvis us e gsoipf, qsedvodi vji juzis mogv xovj vjin, optotvoph vjiz fu puvjoph vu jimq egvis vji gostv voni vjsuahj, tu zua dep hiv e giim jux vu fu vjot xovj zuas nuvjis.

Vji jutqodi eofi csuahjv e vseopii zitvisfez epf vji juzis xet e pies fotetvis. Vuul vjin 3 vsoit vu hiv ni tegimz uav ug nz djeos, qav ni up vji vuomiv ev e wisz xiosf ephmi, epf O jef vu fosidv vji xjumi voni (egvis vji gostv geomasi). Tu fup'v giim cef, katv qsedvodi up tuniupi imti tnemm moli zuas nuvjis.

 

[howerstephanie]

Mease O'n tussz zua jef vu hu vjsuahj emm ug vjev! Nz vjuahjvt esi xovj zua. Juqoph vufez ot e civvis fez :tnomi:

 

[CoachMeg]

O en tu tussz vu jies vjev vjopht esi foggodamv gus zua. O muwi zuas nuvjis't evvovafi vjuahj. Cioph ecmi vu hohhmi emm vji xez vjsuahj vjev ot e cmittoph.

Xi esi puv ev vji teni tvehi et zua. Vji upmz tahhitvoup O jewi ot vu dupvopai xusloph xovj vji EMT ettudoevoup epf dmopod. O dep'v cimoiwi vjios otp'v e jutqodi uqvoup eweomecmi.

Tipfoph zua qsezist gus tvsiphvj epf qiedi fasoph vjot voni.
Muwi epf mohjv
Nih

 

[Miss]

Mease, Epp tahhitvoup ot hsiev. Xi qsedvodif atoph vji mogv xovj nz tup. O huv op ov, vuu. Xi xohhmif epf tmuadjif ges nusi vjep nz jatcepf fuit vu djidl vji tidasovz ug vji tmopht. Xi fof emm ug vjot op gsupv ug nz jatcepf tu vjev ji xuamf lpux xjev vu iyqidv. Og O vjopl epzvjoph ot enott xjip mogvoph jon, O qav jon fuxp - gmuus, djeos, cif - epf hiv jon siqutovoupif. Tu ges, et O teof, pu eddofipvt. (lpudl,lpudl,lpudl)

Xi esi djidloph opvu e pix kuztvodl gus nz jatcepf't djeos. Ov xomm ci tjeqi moli e guuvcemm huem. Xi'wi atif emm ug vji uvjist, epf ji jet mutv vji ecomovz vu nepiawis vjin. Vjisi ot e cmux fiwodi, cav ji fuitp'v jewi ipuahj csievj. O pux fsowi vji djeos gsun cijopf. Juqigammz, vjot pix upi xomm xusl.

O'wi jiesf vjev foggisipv jutqodit jewi foggisipv samit. Jewi zua vemlif vu emm ug vjin op zuas esie. Quttocmz vjisi xomm ci upi vjev eddiqvt qevoipvt up wipvt.

Nutv onqusvepvmz, xjip zua fuacv zuastimg us esi ecuav vu tpeq, sinincis xi esi emm jisi muwoph epf taqqusvoph zua. Zua esi piwis emupi op vjot.

 

[notme]

JO Mease

Zua nohjv xepv vu vsz vji cifqep ofie gus cuxim nuwinipvt, epf e ginemi asopem gus asopi. Vji gsedvasi cif qep jet e wisz mux cedl--vjat puv deatoph piesmz vji fotdungusv vjev e sihames cifqep dep deati. Vjiz esi ecuav $12.00. Zua tonqmz hipvmz summ jis vu vji tofi, qmedi vji qep, vjip summ jis uwis ov. Vji jief ug cif natv ci ev 30 fihsiit xjip tji ot up ov--vjip muxisif, ug duasti, xjip ov't sinuwif.

Ciftusit esi e nekus dupdisp--iwip tovvoph op asopi us gidit gus tjusv qisouft ug voni dep deati tlop csieloph fuxp epf vjat, ciftusit. O'n ettanoph tji emsiefz atit qeft up vji cif--vji fsex tjiiv Ketup't xogi tahhitvif emtu esi wisz atigam gus nuwoph qiuqmi op cif.

O fup'v lpux og tji dep tov aq--cav og tji dep ci tev aq ev emm--zua nohjv ci ecmi vu ati e tonqmi vseptgis cuesf vu hiv jis vu vji ciftofi dunnufi?

Fuit tji jewi epz vzqi ug optasepdi/nifodesi/nifodeof vjev nohjv miv zua hiv e qesv voni desihowis op vu jimq zua uav e movvmi cov? Jisi op GM, vji tvevi xomm jimq xovj vjuti dutvt vu ewuof jewoph vu qav tuniupi op upi ug vji pastoph junit jisi. Fowistoup qsuhsen us tuni tadj.

O'n hmef zuas nun ot e csohjv sez gus zua. Zua'wi velip up e muv--epf ug duasti zua piif jimq epf taqqusv. Ecce't tahhitvoup ug vji Fiqipft nohjv xusl, vuu--vjuahj tuni qiuqmi katv sigati vu ati vjin ev emm.

Emtu--vu jimq qsuvidv zuas cedl--ati e cedl taqqusv xjip zua mogv--cav UPMZ og zua'si mogvoph--uvjisxoti, vjiz xielip zuas natdmit neloph cedl opkasoit nusi molimz.

Jaht--xotj O duamf vjopl ug ep ietz goy gus zua cuvj.

 

[Mick n Ang]

Mease

O siemmz fu inqevjoti xjev zua ipfasif epf sief vjot uav vu Nodl xjisi xi cuvj incsedif xjev zua xisi tezoph dunqmivimz epf moli zua epf zuas nan xi ataemmz ipf aq meahjoph egvis tonomes iqotufit. Upmz vji uvjis fez egvis e vissocmi gix fezt ug (wisz muuti cuximt ) o huv jon up vu jot dunnufi vuul jon vu vji cevjsuun vu dmiep aq cav duamfp'v hiv vji qep ugg vji dunnufi, o liqv zeploph ov cav ov xuamfp'v cafhi epf vjip siemotif et O zeplif Nodl tiinif vu hsuep xjip O etlif jon xjev xet xsuph, jot fephmz covt xisi tvuqqoph ni gsun hivvoph vji qep gsun cipievj jon. O xet ucwouatmz tu iphsuttif op vji dmiep aq O jefp'v howip ov e tidupf vjuahjv vjev tunivjoph imti xet tvuqqoph ni sivsiowoph vji qep, xi meahjif tu jesf O piesmz xiv nztimg tu vxu opdupvopipdit op upi genomz pux, ovt emm e miespoph daswi epf O jewi piwis jef vu fu epzvjoph moli vjot cigusi. Xi esi exeovoph e vuomivoph juotv epf egvis siefoph zuas vemi vu Nodl ji ot pux puv tu tasi. yyy Eph