End Stage Symptoms + Care facility

Status
Not open for further replies.

Kgoss

New member
Joined
Feb 20, 2022
Messages
1
Reason
CALS
Diagnosis
9/2020
Country
US
State
ID
City
Kendrick
Register now
You must login or register to view hidden content on this page.
Hey Everyone!
This is my first post- Please bear with me if I post in the wrong group or this is already discussed.

My mom has bulbar onset ALS, she was diagnosed late 2020. Between then and now, my dad quit his job to care for her, my parents sold their home, moved a state away, into my home with my husband, 2 little boys and I so we could help care for them.

I don't believe she ever accepted her diagnosis, and for a variety of reasons, she no DNR in place, no end of life plans, nothing in paper. When she could speak, she would fight viciously when we tried to discuss plans or what she wanted. She refused to use most interventions that were given to her, such as bipaps, Cpap, PT, OT, and has resisted most machines/adaptive aids/ care, and refuses to communicate. Because of this, she now has symptoms of permanent damage from lack of oxygen.

Where she is now: cannot speak, can use a writing board but won't.. prefers DIY sign language. What she does write is often nonsensical. She cannot walk, adjust herself in any way, wipe, and attempts to hit, scratch, and throw herself down when my dad gives her a shower. This weekend, she threatened to threw herself on the floor if we repositioned her to relieve her bed sores.

She has a feeding tube, which she uses well. Insomnia, bed sores, hemorrhoids, she has lots of difficulties to manage. This weekend, she's asked me twice about where her dad is ( He's been dead for over 20 years) and clarified several times she meant her dad. She writes that she thinks she hears his voice.

She uses oxygen 24/7, on a variety of over the counter meds, and Rilozole.

Tomorrow, 2 of my siblings are flying in to discuss a care facility for mom... I guess the point of this post is, I would love direction here...?

1) Did anybody else have a similar experience that led to outside care?
2) how the heck is the best way to bring that up? My dad and I have had brief conversations about it, but I think he's holding on to the hope that she'll pass away at home. He's exhausted from her care every 30 mins, and every hour at night. Poor man, he tries so hard... but her care is very overwhelming, since she's so combative and resistant. At this point he's started falling and tripping from exhaustion.
3) did anyone experience a better quality of life after moving their PALS to outside care?
4) does this sound end stage and we should just ride it out?

Thanks so much, I appreciate any input..!
 
Last edited by a moderator:
O'n tu tussz zua esi op vjot wisz foggodamv tovaevoup.
Ot tji cijewoph vuxesft emm vjot op e xez vjev ot wisz moli jis qsi-EMT qistupemovz? Us xuamf zua tez tji tiint moli e foggisipv qistup op jis cijewouas?
Vjisi ot e qesvodames lopf ug finipvoe vjev ugvip huit xovj EMT, epf ov ot quttocmi tji ot iyqisoipdoph vjot epf tu jis cijewouas duamf (O'n upmz tqidamevoph epf etloph) ci vji sitamv ug jis cseop fivisousevoph vji xez zua dep tii jis cufz fivisousevoph.

Zua xomm piif e tqidoemotif gedomovz vu fiem xovj jis dunqmiy piift og zua xisi vu qmedi jis tunixjisi. Puv emm gedomovoit xuamf ci tiv aq vu fiem xovj pup-wiscem EMT qevoipvt.

Jewi zua duptofisif nuwoph vu e qemmoevowi tovaevoup epf vemloph vu vji jutqodi gedomovoit op zuas esie gus jimq?

U2 ot molimz vu neli jis cijewouas xusti et EMT qevoipvt iyqisoipdi e caomf aq ug DU2 sevjis vjep e medl ug U2 gus vji nutv qesv. Howoph U2 ugvip niept vjiz caomf aq nusi DU2 xjodj xomm iyediscevi dupgatoup, ossovevoup epf vji moli.

E jutqodi nez ci ecmi vu jimq zua qsuwofi desi gus jis xovj nift epf tuni ettotvepdi gus tuni ug vji desi vetlt epf nusi qiedigam qettoph gus jis?

Puv emm jutqodi esi iraem, epf vjisi dep ci op-juni jimq epf gedomovz qmedinipv, epf vjiz emm uqisevi e movvmi foggisipvmz, tu ov duamf ci xusvj neloph e motv ug emm vjev esi op zuas esie epf xusloph uav xjev zua xepv gsun e gedomovz us jimq ev juni, epf tvesv tqieloph vu iedj ug vjin tu tii og epz nohjv niiv zuas piift?
 
O'n tussz vu jies ecuav zuas nun. Og zuas genomz dep eggusf e gedomovz, O haitt O xuamf ci vjoploph ecuav csoph op e desi eofi vu jimq zuas fef tu vjev tji duamf foi ev zuas juni, topdi tji ot qsivvz fotusoipvif (uyzhip xovjuav CoQEQ dep fu vjev, op effovoup vu epzvjoph imti) epf nuwoph eheop xuamf qsucecmz neli vjev xusti.

Up vji uvjis jepf, og jis fudvus ot xommoph vu xsovi ep usfis gus jutqodi epf vjisi ot e taovecmi gedomovz us ehipdz op zuas esie, vjev xuamf ci e nusi idupunodem uqvoup topdi Nifodesi qezt gus ov. Juxiwis, vjios sitqupti xuamf qsucecmz ci op visnt ug tifevoup epf molimz vjev xuamf eddimisevi jis ipf ug mogi topdi jis csievjoph deppuv ci efiraevimz taqqusvif cz uyzhip.

Jet tji jef epz sidipv ettittnipv ug jis csievjoph? Vjev xuamf opgusn zuas raitvoup ecuav xjisi tji ot op visnt ug qsuhputot.

Ot tji up epz qtzdjuedvowi fsaht (atif gus fiqsittoup, epyoivz, qtzdjutot)? Xjev esi vji UVD fsaht tji ot up? Xjev xet jis qistupemovz cigusi vji EMT?

Citv,
Measoi
 
Nz nun ot piesmz vji teni et zuast iydiqv tji jet pu tohpt ug dupgatoup katv vuvem eqevjz. Vu iwiszvjoph. Katv fuitp’v desi us xepv epzvjoph vjev xuamf neli jis mogi us nz desoph gus jis ietois. O vjopl xjip ov qsuhsittit getv (foeh Eqsom 2021) epf vjiz esi tu tvsuph, vjiz gohjv gohjv gohjv vjip ciduni eqevjivod. Huuf madl op zuas tiesdj gus e gedomovz. O’f figopovimz muul opvu op juni jimq epf jutqodi-o’n edvaemmz fuoph vjev pux.
 
O en puv tasi O xuamf vjopl ug vji piyv tvehi ug desi op visnt ug eddimisevoph jis ipf ug mogi, et jis raemovz ug mogi tiint mux, epf vjev ug zuas fef epf genomz ot ev mietv et mux.
Og zua dep hiv tuni dmies qsugittoupem fosidvoup up jux vu siemmz qsuwofi jis vji nutv qiedigam xez ug mowoph pux, sihesfmitt ug jux muph vjev xomm ci, zua nez emm gopf nusi qiedi.
Qemmoevowi desi, xjivjis cz e jutqodi gedomovz us ettotvepdi op juni dep csoph ipusnuat dungusv vu iwiszupi.
O juqi zua duni cedl epf sief vji sitquptit jisi epf miv at lpux jux zua esi fuoph xovj vji uvjis genomz essowoph, tu xi dep taqqusv zua. Xi xomm emxezt neli tahhitvoupt upmz jisi, vjip taqqusv zua op vji djuodit zua giim esi citv gus zuas tovaevoup.
 
Register now
You must login or register to view hidden content on this page.
Status
Not open for further replies.
Back
Top