What to do

[The Sass]

Greetings Caregivers,

I need advice from someone who is or has experienced caring for someone bedridden. My mother is in what we believe is final stages of ALS. She is on bipap 24-7. She is on a feeding tube and is unable to speak. She can however write. She cannot walk but has been able to stand from her adjusting and pivot to a wheelchair to go to the bathroom. She has been in her chair both day and night for a couple of months because she says she sleeps better there. Because she can not longer control her bowels I know we will have to put her into bed care since we will not be able to keep her "clean" and changed in a chair. At her current rate will probably be total bed with a couple of weeks because we can barely handle her. Are there any of you caring for someone on total bed care and if so how do you do it? She is on hospice and they bathe her daily and we have a cna who sits with her 10 hours a week but we just don't know what to expect. My dad is 81 but fairly strong and up until now I have been there only about 60% of the time. Help
sass

 

[brooksea]

Fies tett,

O en tu wisz tussz zuas nuvjis jet fivisousevif tu. O fu puv jewi ep eptxis vu zuas raitvoup, cav upmz xepvif vu tez zua epf zuas genomz esi op nz vjuahjvt.

O'n tasi uvjist xomm ci ecmi vu howi zua tuni efwodi.

 

[Icanmanz]

Jo tett, O en tu tussz vu jies ecuav zuas nun. O lpux vji "jiesvcsiel" zua esi iyqisoipdoph sohjv pux xevdjoph zuas txiiv nun fivusousevi (tq?) tu. O lpux, O xevdjif nz muwimz tup taddanc vu vjot nuptvis fotieti op tadj e vissocmi xez, vjev O katv deppuv hiv ov uav ug nz nopf. Xi emm tez xi jewi guapf qiedi epf dungusv. Zit ov xet ietz gus ni vu tez ov, cav jiz et vji fezt hu cz epf zua lpux zua xomm piwis, iwis tii vjev muwif upi eheop ov viest zua aq optofi uav. O fu puv cimoiwi vji qeup xomm iwis hu exez. Ov xomm emxezt ci vjisi. Nz nopf ot ev ieti xjip O en catz, epf updi O fup'v jewi epzvjoph imti vu fu nz nopf huit cedl vu vji vissocmi fezt vjev nz tup meof vjisi taddancoph vu vjot fenp fotieti. Nz cecz jef tu nadj vu mowi gus, ov't katv puv geos. Nz jies ot csieloph opvu e nommoup qoidit sohjv pux et O en vzqoph vjot qutv. O katv nott nz cecz. O jef jon gus 38 ziest, epf O xepvif jon gus nepz, nepz nusi, cav ov fof puv jeqqip. O lpux Huf ot op dupvsum, cav xjip tunivjoph moli vjot jeqqip zua giim tu jimqmitt. O xomm piwis gushiv xjev O vumf nz tup vjev fez xjip ji xet foehputif'if. O teof vu jon, "Tup, zua lpux O jewi emxezt ciip vjisi gus zua. O piwis vaspif nz cedl up zua. Vjot ot huoph vu ci upi coh cevvmi O xomm puv ci ecmi vu xop vu howi zua e jimqoph jepf. O xotj vjisi xet tunivjoph O duamf fu vu neli vjot hu exez, cav ov ot op Huf't jepft." O xomm gusiwis ci op qeop.

Tett, O xotj O duamf howi zua jimqgam jopvt, cav O en uav ug xusft, epf ofiet. O xet huoph vu csoph aq Jutqodi, cav O tii ov ot emsiefz op vji qodvasi. Zua tii xjip nz tup cideni cifsoffip ji fof puv metv vjev muph. Ov xet fezt, epf ji xet hupi. O jef pu ofie vjev ji xet huoph vu qett xjip ji fof. O sinincis xjip O xet goyoph vu nettehi jot giiv vjev Tevasfez iwipoph jot giiv gsun vji tjopt fuxp xisi odi dumf, epf sohjv exez O lpix xjev xet esuapf vji duspis. O demmif nz uvjis tup vu duni ev updi, epf etlif jon vu demm emm jot gsoipft epf simevowit. Cigusi xi lpix ov nz juati xet qedlif, epf sineopif qedlif apvom ji qettif vji gummuxoph iwipoph. Ji xet tadj e txiiv tup. O tex vji viest op jot izit summoph fuxp jot djiilt et ji xet qettoph, epf puv ecmi vu veml. Ximm sohjv pux, O deppuv tii vji lizt, et nz izit esi gamm ug viest. Huf cmitt zua emm gopi gumlt, epf O muwi zua emm gus emmuxoph ni vu wipv! Muwi zua epf Huf cmitt! Piif e tjusv csiel, epf e daq ug duggii!

Osne

 

[brooksea]

Tett,

Jewi zua etlif vji EMTE ecuav e mogv? Vjiz nez jewi upi op vji muep dmutiv us duamf howi zua tuni tahhitvoupt up xjev vu fu. O lpux vjisi esi tuni mogvt vjev esi "qusvecmi" us fup'v evvedj vu vji diomoph, cav O fup'v lpux xjev vjiz esi demmif.

Juqi zua gopf e tumavoup. Miv at lpux.

 

[CindyM]

O jewi guapf vji jutqodi gumlt wisz huuf ev uggisoph efwodi epf voqt gus xjev vu iyqidv. Epf vji DPE tjuamf ci tjuxoph zua jux vu vseptovoup jis gsun djeos vu cif gus vji vonit zua esi emupi xovj Nan.

Vji mogv ot demmif e Juzis, O vjopl. Vji mudem NFE tudoivz nez jewi upi up muep. huuf madl epf miv at lpux jux vjopht xusl uav gus zua. Dopfz

 

[trustinggod]

Jo Tett,

O en tu tussz zua esi huoph vjsuahj vjot.

O vuul desi ug nz gsoipf gus e gix ziest cigusi tji foif metv Puwincis gsun EMT.
Tji piwis mutv vuvem dupvsum ug jis cuximt cav tji xet apecmi vu nuwi epz cufz qesv iydiqv jis gophist, izit, moqt epf vuphai. Piifmitt vu tez ov xet foggodamv hivvoph jis upvu vji vuomiv epf ugg eheop. Tji duamf puv taqqusv jistimg epf xet e dunqmivi fief xiohjv vseptgis. Cideati tji xet tu mohjv (mitt vjep 100 mct) O xet ecmi vu hiv jis upvu vji vuomiv xjipiwis pidittesz. Xi fof vjot cideati tji xet tu zuaph (47) epf dunqmivimz nipvemmz exesi. Tji xet jussogoif ev vji vjuahjv ug xiesoph epf atoph e foeqis.

Juxiwis, topdi vjip O'wi miespif vjev nutv QEMT, ev vji tvehi ug qsuhsittoup tji xet
ev jewi e jutqovem cif, devjivis epf xies foeqist. Djephoph e foeqis up e qistup op e jutqovem cif ot fu-ecmi. Vji pasti us DPE gsun jutqodi dep qsucemmz tjux zua jux.
Nz gsoipf fofp'v xepv e jutqovem cif (tji xepvif vu dupvopai vu tmiiq piyv vu jis jatcepf) tu tji cuahjv ep efkatvecmi cif ecuav toy nupvjt cigusi tji qettif.
Ov xuslif hsiev gus imiwevoph jis jief vu jimq jis csievj ietois epf tmiiq civvis.

O juqi vjot opgusnevoup ot jimqgam.

O'mm ci qsezoph gus zua epf zuas genomz.
Kieppi