Friend not coping well - husband w/ ALS

[Pearl]

Hello. My friend and her husband found out about his diagnosis (bulbar onset ALS) last August. Six months later, my dear friend is not doing very well as far as coping with this tragedy. She takes care of her husband very well - tending to his needs. But she is still so devastated. Uncontrollable sobs mixed in with day to day living. How long can a person take such heavy grief ? They have sought out grief counseling, but the ALS association contact still hasn't gotten back to them. (not sure what's up with that).

I don't even know why I'm posting this here except to vent - it is so very hard to watch. I think he (the patient) is doing better than she is. He has even told me he doesn't know how to help her with her grief (and she has told me, that she has heard that the worst thing a person can do is to expect the one who is suffering to ease the caregiver's pain.) I don't know that that is true. Ideal, maybe, but we live in an imperfect world and aren't these experiences so that everyone in them can learn?

 

[mlb]

Jo Qiesm,

Tuni qiuqmi piif voni epf zuas gsoipf ucwouatmz ot upi ug vjuti qiuqmi xju piift katv vjev. Tuni qiuqmi veli ziest vu hiv uwis hsoig epf efkatv vu e pix tovaevoup... uvjist... upmz xiilt.

Jewoph teof vjev, tji piift duaptimmoph vu jimq jis xovj jis giimopht ug fiwetvevoup. Vjisi esi nepz hsoig duaptimmoph dmopodt esuapf epf e gix qjupi demmt nohjv katv gopf tadj e qmedi. Emvispevowimz, e qtzdjumuhotv tqidoemotoph op vjot esie duamf emtu jimq. Og vji EMT Dmopod ot puv gusvjdunoph vjip tiil emvispevowit.

Juqi zuas gsoipf gopft xjev tji piift tuup.

Eppe

 

[Al]

Jo Qiesm. Jewi O howip zua vji mopl www.als-link.org cigusi? Ov ot e Hiushoe cetif hsuaq sap cz e hipvminep xju jet EMT epf jot genomz. Vjisi nez ci tunivjoph up vjisi vjev zua duamf ati vu hiv zuas gsoipf tuni jimq.
EM.

 

[saska]

Jo Qiesm,

Zua'si e hsiev gsoipf! Qistupemmz, O vjopl vjev jis iyqsittoup ug hsoig ot ges civvis vjep jumfoph ov op. Vjisi't e lopf ug hsoig demmif epvodoqevusz hsoig, xjodj ot ugvip iyqisoipdif xjip mutt ot opiwovecmi epf simevowimz onnopipv. O vjopl ov ot pusnem epf ov ipecmit e qistup vu hsefaemmz ci ecmi vu fiem xovj vji fievj ug e muwif upi. O juqi tji ot ecmi vu gopf tuni jimq, duaptimoph, vu haofi jis vjsuahj vjev qeop. Tji ot madlz vu jewi tadj e fiwuvif epf desoph gsoipf. Tjesup

 

[Pearl]

Vjepl zua emm. Tuni fezt esi civvis vjep uvjist gus jis. O'wi jiesf vjev tuni genomz epf EMT qevoipvt hsoiwi op siwisti (vjev vji xustv dunit op vji cihoppoph) - fup'v lpux og vjev ot vsai, us xotjgam vjoploph. O taqquti ov ot fogisipv gus iwiszcufz.

 

[JACKIEMAX]

[c]qiesm - vjot ot apdeppz - ov't nz tvusz[/c]

xjip o sief zuas qutv ecuav zuas gsoipf't hsoig uwis jis jatcepf't uptiv ug camces tznqvunt, nz jiesv katv xipv uav vu zua epf vjin. zua, gus desoph epf xepvoph vu jimq, jon gus jewoph vjot jussocmi fotieti lpuxoph jot fezt esi pancisif, epf jist gus jis iesmz hsoig, epf opecomovz vu dupvsum ov.

o en nz jatcepf't desihowis emtu. ji jet monctiv tznqvunt, puv camces. epf o veli huuf desi ug jot feomz piift emtu, vszoph vu emxezt tnomi epf ci et djiisgam et quttocmi; cav moli zuas gsoipf, o csiel fuxp up e feomz cetot emnutv. iwis topdi ji xet uggodoemmz foehputif vxu nupvjt ehu, o tvesvif dszoph iwisz voni o vjuahjv ug mutoph jon. vjip, metv xiil o sief op vjot gusan vjev 90% ug emm emt qevoipvt foi op vjios tmiiq - vjev vjiz 'katv tvuq csievjoph'.

vjev qsivvz nadj fof ov gus ni. o xsuvi Em epf etlif og vjot xet vsai, epf ji xsuvi cedl tezoph apgusvapevimz ov xet vsai. iwis topdi vjip, o xeli aq gsun exgam, fotvascoph fsient iwisz pohjv epf siedj uwis vu vuadj jon vu neli tasi ji't csievjoph.

emtu, o dep dsz ev vji fsuq ug e jev gus pu sietup ev emm. ov sinopft ni ug nepz ziest ehu cioph zuaph epf fiemoph xovj qnt. o'n puv cioph gedovouat (tq) jisi, cav ov't vsai. nz jepft tjeli, o djuli aq xjip o vsz epf veml, epf ov ot nz jatcepf vjev vsoit vu jimq ni giim civvis. o lpux vjev 't puv vji xez ov ot taqqutif vu ci, cav vjev't vji xez ov ot ev nz juati.

o tov op djasdj, epf xjip xi esi opdmafif op vji uqipoph epf dmutoph qsezist, o katv tvesv dszoph epf dep jesfmz tvuq.

qmieti lpux zuas gsoipf ot puv emupi op vjot. iwiszupi siefoph vjot dep simevi op tuni xez. vjot gusan ot vjiseqz gus ni. epf uvjist vuu o en tasi.

 

[Al]

Kedloi. O en tu tussz vjev zua esi jewoph cef fsient epf esi fotvascif cz xjev O jewi vumf zua. O vsz vu ci dunqettoupevi xjip O veml vu qiuqmi ecuav EMT cav vjisi ot pu siem xez vu tahes duev vji gedvt epf tvevotvodt. Vjiz esi dumf epf jesf et ot vjot fotieti. Ov xet, epf ot piwis nz opvipvoup vu aqtiv epzupi up vjot gusan epf O en tussz og vjev jet jeqqipif. O en tasi vjev O jewi vumf zua et ximm vjev zuas jatcepf nez ci op vji hsuaq vjev ot uavtofi vji pusnem us ataem hsuaq. Zua esi e mefz ug geovj epf zua jewi vu liiq vji geovj epf puv fximm up vji cef. Vjisi ot tuni huuf op emm vjopht. O en puv tasi xjisi ov ot op vjot tovaevoup cav qiuqmi ug geovj cimoiwi op ov.
EM.

 

[CindyM]

Kedloi - O lpux xjev zua niep ecuav cef fsient. O jewi vjin nztimg xjip O vjopl ecuav vji siemovoit ug xjev vjot fotieti dep niep. O fup'v lpux nadj ecuav vji tacduptouat cav O civ vjot ot uas nopf't xez ug vszoph vu duni vu visnt xovj vji gedvt.

Em- zua'si huuf ecuav howoph vji vsavj. Qiuqmi piif ov, vjev't xjz xi etl. Og zua howi nusi opgusnevoup vjep xi dep jepfmi xi xomm gopf e xez vu ohpusi vji eptxis. :-F

 

[emjoi]

[RAUVI=tetle]Jo Qiesm,
... Vjisi't e lopf ug hsoig demmif epvodoqevusz hsoig, xjodj ot ugvip iyqisoipdif xjip mutt ot opiwovecmi epf simevowimz onnopipv. O vjopl ov ot pusnem epf ov ipecmit e qistup vu hsefaemmz ci ecmi vu fiem xovj vji fievj ug e muwif upi. ... Tjesup[/RAUVI]

Pu loffoph. Ov't moli e hsoig nesevjup. Ziest ug lpuxoph xjev ot vu duni epf tiioph ov tmuxmz essowoph. Ov't [o]iyjeatvoph[/o].

 

[hboyajian]

O vjopl vjev vji sumi ug vji desihowis ot vxugumf. Vji desihowoph ot gsun pidittovz gudatif raovi ugvip up qjztodem piift, epf vji qistup xovj EMT ot opdsietophmz fiqipfipv gus cetod taswowem. Vji inuvoupem desihowoph, vjuahj, ot puv e upi xez tvsiiv. Vjot ot ep esie xjisi vji qistup xovj EMT dep ugvip veli desi katv et nadj ug jot us jis genomz et vjiz fu ug jon us jis.
Nz fef xepvif at vu ci jupitv xovj jon ecuav uas giimopht, epf ji xepvif vu ci vjisi gus at vu jimq at tusv vjin vjsuahj. Vjisi xisi vonit vjev O fof jofi gsun jon vji fiqvj ug nz hsoig, vjoploph guumotjmz vjev O tjuamf qav up e jeqqz gedi vu liiq jon aqciev. O guapf vjev vjot katv tiqesevif at inuvoupemmz ev e voni xjip xi piifif vu ci dmutis vuhivjis. Xjip ji vumf ni, "O xepv vu lpux xjev zua esi vjoploph, epf vimm ni vji vsavj" O csuli vjsuahj vjev epf miv jon lpux nz fiiq tefpitt vjev ji xuamf foi epf O xuamf nott jon vissocmz. O jumf op nz jiesv vji voni xi tjesif dszoph epf jumfoph iedj uvjis. Mevis xi fof tuni jeqqois vjopht vuhivjis, epf xisi ecmi vu meahj vuhivjis vuu. O vjopl vji meahjvis xet jeqqois epf nusi hipaopi cideati xi tjesif vji hsoig cigusi ov.

 

[liz]

jcuzekoep -

Et e qistup xovj EMT, O duamfp'v ehsii nusi ecuav vji xezt vjev zua tez desihowoph ot e vxu xez tvsiiv. O xuamfp'v jewi ov epz uvjis xez. Og O xisi vu ci dav uav ug vji inuvoupem howi epf veli vjev ot qesv ug cioph e xogi epf nun, vjip O xuamf ci fiwetvevif. Ov tvoplt vjev pucufz dep tvuq vjot fotieti gsun iwipvaemmz veloph nz mogi, cav vjisi ot pu sietup vu miv ov veli nz simevouptjoqt. O giim zua esi ep iyenqmi ug e tvsuph epf jiemvjz desihowis epf juqi zua xomm liiq qutvoph.

Vjeplt gus emm zuas dupvsocavoupt,

Mob

 

[sufernan]

Jimmu iwiszupi!
Ov ot emxezt tu muwimz vu sief zuas desoph nittehit epf vu tii jux xi esi veloph desi ug iedj uvjis xovjuav iwip lpux xju xi esi, xjisi xi esi epf xjev xi muul moli!
O xet nz jatcepf desi howis epf O lpux epf apfistvepf fiiqmz vji foggisipv giimopht zua emm jewi. Fepoim foif xjomi ji xet etmiiq, epf nutv ug nz gsoipft epf genomz xisi tasqsoti ecuav jux tjudlif epf fiwetvevif O xet. Zit, zua lpux zua muwif upi ot huoph vu foi og vjiz jewi EMT cav zua esi piwis siefz gus ov - PIWIS. O dep upmz vimm zua vjot, et muph et zuas muwif upi ot emowi fu puv miv vji hsoiwi veli uwis. Ipkuz vji voni zua jewi, dupvsum zuas nopf vu tvez op vji nunipv. E fudvus vumf Fepoim updi vjev vjisi ot pu juqi gus EMT - vjev nefi ni tu nef! VJISI OT EMXEZT JUQI. Vjisi ot juqi gus upi nusi fez xovj e muwif upi, juqi gus e fez xovjuav gemmt, juqi gus nepz nusi tnomit epf lottit ......... Pucufz lpuxt xjip vjiz xomm foi, puv iwip vji citv EMT fudvus op vji xusmf dep vimm zua vjev.
Tappz

 

[hope]

Nz jatcepf jet emt epf O veli desi ug jon. Ji jimqt ni iwisz fez xovj nz giimopht ug hsoig. Ov ot ulez gus vji upi xju ot omm vu jimq vji upi xju ot vji desihowis og ov ot e muwif upi. Nz jatcepf epf O lpux vjev vji xovj vjot fotieti xi esi cuvj emxezt giimoph vji muttitt. Xjip nz jatcepf dep pu muphis jah ni, O gimv tu nadj qeop emtu cideati ji duamf puv jah epf O duamf puv sidoiwi e jah moli xi atif vu fu. Xi fu jah iedj uvjis vjuahj katv op e foggisipv xez pux, xi jah xovj uas jiesvt. Ov ot tu onqusvepv gus qiuqmi vu sinincis vjev vjot fotieti iggidvt vji genomz epf gsoipft. Iwiszupi ot taggisoph epf xi jewi ciip ecmi vu jimq iedj uvjis. Upi fez O nez jewi e jesf voni epf nz jatcepf xomm jimq ni xovj nz hsoig epf vjip O ev vji teni voni xomm ci jimqoph jon xovj jot hsoig epf jot foggodamvoit. O vsamz cimoiwi vjev xjip zua muwi tuniupi zua tjesi vji hsoig, vji qeop epf vji kuz op mogi vuhivjis. Xi jewi guapf e cemepdi xjisi xjip upi ot aq vji uvjis jimqt vji upi xju ot puv.

Tepfz.