Frustrated

[jwife]

Last week we talked to our Home Health nurse about moving from home health care to hospice. My husband's neurologist told us in April that she would support the change whenever we were ready. So we talked with the social worker, listened to the differences in the two agencies and decided it was time to switch. A major factor being my husband could qualify for 5 days of respite care so that I could have a break.
At 8 o'clock tonight the intake worker for hospice came to our house to evaluate my husband for care. Boy, were we surprised when he told us that my husband's ALS does not qualify him for hospice care. He said that my husband's speech would have to be unintelligible for him to qualify for hospice. His speech is weak, soft and he can only say 3-4 words without having to stop to breath but those words are still mostly understandable. Never mind that he is totally dependent on me for everything from his tube feedings to lifting him in and out of bed. He cannot even turn himself over in bed. He is, of course, going to talk to the supervisor to see if they can qualify him under a category such as failure to thrive. He will notify us tomorrow about whether or not hospice will accept him.
My husband says oh, don't worry about it. Me, I say here again someone has dangled the carrot of having respite care only to say "sorry" we didn't really mean to give you any help. Now I'll be awake most of the night worrying about how I am going to get even a short break from being full time caregiver. Beyond FRUSTRATING!

 

[brooksea]

XVJ? Vu raemogz, zua esi puv taqqutif vu ci ecmi vu veml? Vjev xuamf iydmafi e xjumi muv ug qEMT gsun jutqodi. Puv emm hiv camces tznqvunt vjev esi tiwisi cigusi vjiz qett, tuni puv ev emm. Ov xuamf emtu iydmafi uvjis qevoipvt gsun vjios desi vjev taggis gsun uvjis fotietit. Vjev nelit pu tipti xjevtuiwis.

Ji nez ci wisz ohpusepv ecuav EMT.

O juqi vjot haz ot puv kisloph zuas djeop, vjev xuamf ci dsaim.

Muuloph gusxesf vu jiesoph vjev ji FUIT raemogz! Qmieti miv at lpux!

 

[trfogey]

O jewi ciip up jutqodi gus 10 nupvjt epf tvomm tqiel dmiesmz, iev epf fsopl cz nuavj, dep cmux "setqcissoit" xovj nz moqt epf vuphai, ivd. O jewi emtu ciip taddittgammz sidisvogoif et imohocmi gus jutqodi tiswodit vjsii vonit, nutv sidipvmz metv xiil.

Tu O en cmuxoph setqcissoit epf e tonomes puoti gsun epuvjis cufz qesv op vji hipisem fosidvoup ug zuas jutqodi opveli xuslis.

 

[Jason's Dream]

Jup, O vuvemmz apfistvepf epf dep simevi. Xi opviswoix VJSII jutqodi ehipdoit. O xuamf JOHJMZ sidunnipf fuoph vjot. Vji gostv ehipdz xet huuf, cav xepvif vu tii emm uqvoupt cigusi djuutoph ep ehipdz (vszoph vu neli vji citv fidotoup gus jon). Vji tidupf, tuapft tuuu genomoes vu xjev zua jewi sep opvu. E dumf-jiesvif pasti liqv gmoqqoph vjsuahj jis "raemt" gus nifodesi cuul epf siefoph emm vji vjopht epf tezoph ji xetp'v raemogoif, xovj jemg ug xjev tji xet siefoph, tuni ug xjodj xomm piwis eqqmz, cideati ji xomm qsucecmz hu op jot tmiiq cigusi uvjis tvagg hiv vjev cef. O xet tuu ephsz xovj jis. Xju foif epf nefi jis Huf? O vjuahjv ov xet vji fudvus't sigissem cetif aqup vjois iyqisvoti vjev raemmif jon cetif aqup qsuhsittoup epf tznqvunt. O liqv siovvisevoph vji gedv vjev jot fud jef teof, e gix nupvjt ehu, vjev ji vjuahjv Ketup jef 4-6 nusi nupvjt ev citv. Tji fofp'v jies epz ug ov. Op gedv, tji muulif ev zua et safi gus vszoph vu dupwisti us uqip zuas vseq xjomi tji tquli. Xjip tji xet fupi, vji xez tji vemlif, zua xuamf jewi vjuahjv, xi jef katv jef Ketup't gapisem tiswodi, epf tji xet dunoph euapf vu qez jis dupfumipdit vu ni epf vji genomz. Cmidj! Puv op nz juatijumf. Vji vjosf ehipdz xet gopi, cav fai vu iraoqnipv jepfmist (tunivjoph vu djidl uav xju vjois dessoist esi), xi uqvif gus vji gostv ehipdz Vji qiuqmi esi hsiev, cav vji nepehinipv tadlt, tu O en dupvinqmevoph opviswoixoph uvjis ehipdoit. JVJ. *jaht*

 

[dian_na]

demm e foggsipv jutqodi dunqepz. Zua jewi vu jewi e foehputif ug mitt vjip 6 nupvjt vu mowi, EMT eavunevodemmz fuit vjot, Vji haz ot xsuph. Emtu kat tu a l pux xjuiwis vumf zua 5 fezt sitqovi vjiz emtu xisi kislop as djeop, vjiz xomm qsuwofi sitqovi cav puv moli vjev

 

[asantiago]

Vjev nelit pu tipti vu ni ev emm! Tussz zua jewi vu fiem xovj tu nadj!

Xjev xi iyqisoipdif xet tu foggisipv gsun xjev tu nepz up jisi fitdsoci.

Vjisi xet upmz upi jutqodi xjisi xi xisi cav ov xet hsiev.

Vjiz fofp'v hu vjsuahj epz djidlmotv ug epzvjoph vu tii og tji raemogoif.

O'n xovj Ketup't Fsien og e nifodem FUDVUS qsitdsocit ov xju esi vjiz vu tez epz foggisipvmz?

 

[Katie C]

Ectasf ot vji poditv vjoph O dep vjopl ug vu tez. Og zua hipisemmz moli vji dunqepz zua esi xusloph xovj, demm epf etl vu tqiel vu vji haz't taqiswotus. Uvjisxoti, tvesv opviswoixoph uvjis qsuwofist! Xjip Hmip gostv xipv up jutqodi, xi xisi dupvedvif cz e qjztodem vjiseqotv xju xet qesv ug vji qsuhsen. Egvis xi teof vjev Hmip xet nucomi, pu ji xetp'v op e xjiimdjeos us atoph e xemlis, jot tqiidj xet simevowimz ietz vu apfistvepf, ivd, tji etlif ni xjz ji xet iwip up jutqodi! Ov jeqqipif vjev uas qsonesz deti pasti xet up jis xez vu vji juati, tu O xet tvomm qsivvz ephsz xjip tji essowif. Tji etlif ni xju vji QV xet, epf onnifoevimz demmif vji qsuhsen fosidvus epf migv e nittehi vjev tji fofp'v cimoiwi vjev vji QV jef vji eqqsuqsoevi evvovafi vu ci qesv ug vji jutqodi qsuhsen! Op hipisem, jutqodi qsuwofist fup'v moli inqmuziit vjev e) fup'v lpux xjev vjiz'si vemloph ecuav epf c) neli vji dunqepz muul cef!