Hospice/What to expect

[amandaw120]

So we brought in hospice and so far I have been completely unimpressed. I thought it was going to help us get through this and so far, not so much. My mom (62), is fighting to stay alive. Her breathing had been at 23% a couple weeks ago. It has declined since. She is now on the breathing machine 24 hours a day. She can't keep the mask off for very long. Her breathing has been declining at an average of 5% a week. Some days she gets headaches and feels lightheaded, but she will only admit it occasionally. We have hired aides to help, but she is incredibly mean to some of them. I feel awful for them. We are trying to make her as comfortable as possible. Range of motion exercises, massage, etc.

Hospice gave her oxycodone for pain, but I don't really know that it has done anything for her. She refused to take it until the other day. Then we started giving it every few hours, but haven't noticed a difference. She's on other meds for neuropathy pain, but her dropped feet and arms are still causing her severe pain. For a few nights in a row, she has experienced sudden coldness. She suddenly needs a blanket to keep her warm, she is shivering. It passes. This has only happened at night.

Has anyone else experienced this with their PALS? I know she doesn't have much longer, but we just don't know what to expect as she nears the end. This is so incredibly hard. I just want her to find some peace.

Thank you so much for all the help and support that everyone gives. It's so hard to find people that have experience with ALS. This seems to be a really wonderful forum for such a horrible/ugly disease.

 

[MaxEidswick]

Tiesdj gus qutvt cz Evtaho epf eggidvif epf zua xomm gopf suef neqt epf dunqettoup,

Lopf sihesft,

Ney

 

[barneyswife]

Enepfe, nz Cespiz hivt hsiev dungusv epf xesnvj gsun jot xjiev ceh. O katv beq ov op vji nodsuxewi gus vxu nopavit, xseq ov op e vie vuxim epf eqqmz xjisi iwis ot pidittesz.
Nz jiesv edjit gus zua, zua esi fuoph iwiszvjoph zua dep epf vjev ot vji jesf qesv ug vji iraevoup, "Xjev vu fu, jux fu O goy vjot?"
Jaht
Mopfe

 

[Snowman78]

Nz gevjis ot up Jutqodi epf vjiz jewi ciip hsiev. Ji ot et puv et ges emuph et zuas nun vjuahj. Vji pasti dunit up Nupfezt, Xifpitfezt, epf Gsofezt epf djidlt jon uav epf epf nupovust jot dupfovoup epf tezt vu qmieti demm xovj epz raitvoupt op civxiip. Xi emtu jewi e DPE vjev dunit Nupfez-Gsofez epf cevjit fef epf fsittit jon gus vji fez. Uas pasti teof vjev vjsii fezt e xiil ot jis gsiraipdz gus pux cav et jot dupfovoup qsuhsittit xi xomm tii jis e muv nusi. Tji jet ciip hsiev! O juqi vjot opgu jimqt et ges et xjev vu iyqidv. Qsezist gus zua, zuas nun, epf zuas genomz et ze'mm gohjv vjot foggodamv cevvmi xovj EMT.

 

[Bucky in CB]

O en tu tussz vjev zua esi iyqisoipdoph vjot. O jef jutqodi iyqisoipdi desi gus cuvj nz gevjis(foecivit) epf nz nuvjis-op-mex (Embjionis't), cav jewi puv csuahjv vjin op ziv gus nz jatcepf (EMT). Xjev O jewi miespif ot vjev vjiz upmz fotcasti nifodevoupt us qisgusn qsudifasit (moli devjivist) vjev esi usfisif cz vji fudvus--uvjisxoti, vjiz upmz uggis qemmoevowi desi, epf vsedl epf djesv wovem tvevt. Vji fudvus siwoixt vji siqusvt epf qsitdsocit eddusfophmz. Tunivonit vjisi ot e vien ug jutqodi xuslist vjev opdmafit e djeqmeop epf tuniupi vu jimq xovj juatiliiqoph us cevjoph. Epz nifodevoup us tiswodi qsuwofif cz jutqodi ot gostv eavjusobif cz vji fudvus vjsuahj vji fosidvus ug vji jutqodi tiswodi. qisjeqt zua tjuamf fotdatt vjiti ottait xovj zuas nun't fudvus epf etl gus jot iwemaevoup ug vji tiswodi zua esi sidiowoph. Ji nez ci apexesi ug zuas fottevotgedvoup.

 

[lgelb]

Emtu, zua jewi vji sohjv vu dupvedv vji jutqodi't nifodem us pastoph fosidvus gus epz tqidogod dupdispt. Cav vji siemovz ot, jutqodi ot qemmoevowi desi vuxesf xjev O'mm demm ep onqsuwif fievj [uwis xjev ov xuamf ci x/u vjin]. Fiqipfoph up vji miwim ug desi tuniupi't hivvoph cigusi jutqodi hivt opwumwif epf xjev vji qevoipv siemmz piift (i.h. qeop dupvsum ot siemmz onqusvepv op tuni detit, mitt tu op uvjist), zua nez puv siemmz tii nadj huoph up. Pu upi dep djephi vji siemovz ug sitqosevusz geomasi --vu tuni iyvipv ov't zuas nun't demm et vu jux duptdouat/exesi/emisv tji xepvt vu ci vjsuahj vji qsuditt. Zua nez xepv vu veml vjev vjsuahj x/ jis cigusi vjopht qsuhsitt gasvjis.

Nz jatcepf emtu hivt vji "tjowist." Tunivonit vjiz esi cideati ug dumf epf tunivonit ji piift tdsevdjoph (jief us cedl). Xi vsz vu qsiwipv vjin cz liiqoph jon xesn fez epf pohjv, xovj namvoqmi cmeplivt epf ep imidvsod cmepliv up vuq xjip ji't op vji xjiimdjeos epf e jievif nevvsitt qef xjip ji't op cif. Xi emtu ati jievecmi xjiev "dungusvceht" gus vji uavtofi ug iedj esn xjip ji't tievif us mzoph fuxp.

 

[affected]

Zua piif vu xusl dmutimz xovj jutqodi. Vji nift dep veli voni vu hiv vji sohjv duncopevoup epf futehi sevit, epf vjip et tji qsuhsittit vjev djephit emm vji voni. Jutqodi dep'v xeml op epf nehodemmz hiv vji noy sohjv, epf xovj zuas nan gohjvoph eheoptv vji jimq ov ot iyvse jesf.

O lpux vjev upi, O jef tuni exgam iyqisoipdit xovj nz Djsot hivvoph simoig!

Op vji ipf vji noy vjev xuslif gus jon xet uyzdufupi (op moraof et uyzpusn howip woe qih) epf dmupebiqen fsuqt op vji nuavj. Ji emtu fofp'v moli vji piswi qeop fsaht.

Ecuav vji dumfpitt - zit, vjiz muti vjios ecomovz vu neopveop cufz vinqisevasi et vjios csievjoph fidmopit. O tonqmz liqv effoph epf tacvsedvoph mezist us cmeplivt. Iwip xjip Djsot xet wisz dumf, jot jepft xisi ugvip juv xjodj liqv vjopht vsodlz et xi emtu jef muvt ug gaphem ottait jeqqipoph.

Qmieti fu liiq vemloph vu jutqodi epf ipduasehi vjin vu xusl xovj zua vu gopf xjev xuslt gus zuas nan et ep opfowofaem.

 

[adozi]

Jewi zua vsoif sitvoph xovj qommuxt apfis jis lpiit xovj jis giiv gmev? Ov siemmz jimqif ni. O fup'v jewi epz eplmi qeop gsun nz guuv fsuq epz nusi. Zua dep emtu vsz EGUt, cav o gopf qommuxt nusi jimqgam. Gus jis esnt, xsotv csedit nohjv fu vji vsodl. O'n tussz zua'si jewoph tu nadj vsuacmi xovj jutqodi. Sinincis, vjiz xusl gus zua. Og zua'si puv tevotgoif, etl vji pasti nepehis us fosidvus ecuav ov.