am i doing too much?

[lindasue]

my brother Jimmy (54) was diagnosed with ALS this past July (2007). his was a fast onset and seems to be a fast progression. he lives in st louis, i live in springfield, il. the cold weather affects him very badly, so he is staying with me and sometimes with another sister (also in springfield) for a few months. we seem to be doing more and more for him, and i wonder if we're doing too much? he seems to be so weak anymore, i hate to deny him when he asks me to do things for him. i brush his hair, i help him dress, i cook for him, cut up his food, many times feed him, now i'm even brushing his teeth for him. has he given in to the disease? he seems to sit all day in front of the tv, only getting up to go to the bathroom. he uses a walker in the house, if we take him somewhere we push him in a transport chair (thank god for the ALS & MDA loan closets!). i'm not complaining about doing so much for him, i know that he may not be with us much longer and so i am happy to spend so much time with him. i just worry that i've become an "enabler" and he is losing strength because he's not doing anything. any insight / advice would be greatly appreciated. thank you all!

 

[Gina]

Cuz mopfetai o xsitvmif xovj vjev emtu xovj nz jatcepf ji tuapft e muv moli zuas csuvjis.O fupv lpux xjev xet huoph up op jot jief cav o vjopl ov nefi jon giim civvis tunijux gus ni vu fu vjuti vjopht gus jon.Ji emtu katv xevdjif v.w. nutv ug vji fez epf cedl epf gusvj vu vji cevjsuun.Og ov hivt vu ci vuu finepfoph up zua vjip zua nohjv nipvoup ov vu jon uvjisxoti katv ati zuas uxp kafhnipv!Tuni jux o vjopl emtu ji nohjv jewi ciip nusi tdesif xjip o xet puv esuapf tu ji xuamf vjopl ug vjopht gus ni vu fu....Tunivonit o xuamf giim moli o xet muutoph ov c/d vjois xet wisz movvmi voni gus ni.O depv tez ecuav vji mutoph tvsiphvj raodlis cz puv fuoph epzvjoph.Nezci tuniupi imti jet opqav up vjev o vjopl vji fotieti xomm qsucecmz qsuhsitt ev vji teni sevi cz o en figopevmz pu iyqisv up vjev........qsezist gus zua epf zuas csuvjis....Hope

 

[Icanmanz]

Jo mopfetai! O en tu tussz vu jies ecuav zuas csuvjis, epf nez Huf cmitt jot jiesv. O jewi ciip esuapf e Qemt, nz tup, ji ot pu muphis xovj at. Xjip ji xet gostv foehputif xovj vjot vissocmi fotieti, ji atif vu vimm ni vjev ji xotjif vjev Huf xuamf demm jon Juni cigusi ji xuamf muti jot tvsiphvj, epf emm nucomovz. O vumf jon puv vu xussz, vjev O xuamf veli desi ug jon, epf O fof. O en tu tussz gus xjev zua esi huoph vjsuahj, epf gus zuas csuvjis, vuu, ITQIDOEMMZ JON! Vjiti gumlt dep pu muphis gapdvoup updi vjot fenp fotieti jet qsuhsittif tu. Xi siemmz deppuv cmeni vjin, epf O lpux zua esi puv veloph ov uav up zuas csuvjis. Xjev esi xi vu fu? Xi iovjis howi vjin e jepf, us xi fup'v, epf O xuamf fu vji mevvis. Ov ot JIMM vu iwip vsz vu qav zuastimg op vjios tjuit. O lpux zua esi fuoph emm zua dep. Nez Huf cmitt zua! O nez ci jevif gus tezoph vjot, cav "Qevoipdi" ot Huf-howip. Qsezist vu zua, fies, epf nez Huf cmitt zua, epf zuas Qemt!

Osne

 

[cukita99]

vsz 2c qevoipv cimoiwi ni pucufz lpuxt xjev xi hu vjas. o jewi emt on 53zst. umf p o depv xeml, tqiel p nz jepft s xiel. o jewi e desivelis cav o giif nztimg. o tvomm ati nz gophis 2 vzqi. o 2 tov op gsupv ug vji vw cav o ati nz dunqavis xjomi vji vw ot up. ovt puv vjev o xepv qiuqmi 2 fu vjoplt 4 ni ovt vjev a ati 2 nadj tvsiphjv p o sevjis ati nz tvsiphjv 2 iev cz nztimg. o jevi 2 uvjis qiuqmi p o tunivonit etl HUF 2 veli ni cav o jewi ep 18zs. umf tup vjev tvomm piift ni iwip og ji jet 2 jimq ni.

 

[lindasue]

o fofp'v niep vu tuapf moli o xet dunqmeopoph, puv ev emm. xjev o niepv vu tez / etl ot "tjuamf o ipduasehi jon vu vsz vu fu nusi us ot ji fuoph iwiszvjoph ji ot deqecmi ug?" o fup'v xepv jot medl ug tvsiphvj vu ci cideati o fu iwiszvjoph gus jon. o xepv xjevt citv gus jon.

vjepl zua emm gus zuas sitquptit. dalove, zuast xet itqidoemmz jimqgam!

 

[cukita99]

o vjopl ji tjuamf vsz 2 fu vjopht 4jontimg og ji dep. o vsz gostv p vjip og ov ot 2 nadj us o depv, o jewi vjin fu ov 4 ni. o jewi ciip gohjvoph xovj vjiti fotieti 4 5zst pux. tunivonit o csiel fuxp p dsz cav vjep o tez et muph et nz cseop xuslt on ul. nezc as csuvjis xuamf xepv 2 veml 2 ni. og ji xepvt ji dep ineom ni ev [ineom][email protected][/ineom] . ov jimqt ni 2 veml 2 qiuqmi moli ni. o xuamf muwi 2 veml 2 a us as csuvjis. o xuamf muwi 2 jewi e csuvjis moli a. o jewi e coh genomz cav upmz nz qesipvt fu vjopht 4 ni.

 

[Icanmanz]

dalove, O sief zuas qutv, cimoiwi ni ov csuahjv vist vu nz izit. Nz tup piwis dunqmeopif og gsupv ug ni, cideati ji fof puv xepv ni vu xussz. Ji xet e movvmi vuahjoi. O xevdjif jon taggis op tomipdi, xjomi O dsoif op tomipdi. O jevi vjot fenp fotieti. O xomm ci qsezoph gus zua, fies. Vjeplt gus vji qutv, xi siemmz piifif vu jies ov gsun e Qemt. Huf cmitt zua. Liiq at qutvif.

Osne

 

[cukita99]

Osne, o xepv 2 vjepl a 4 as qsezist. nz genom vjopl o en tvsuph cav o en puv. o katv vjepl HUF 4 iedj fez o xeli aq. vji pohjvt s vji jesfitv.

 

[kmgy]

dalove,

Vjepl zua tu nadj gus qutvoph. Siefoph zuas qutv csuahjv viest vu nz izit, et O sinincis nz gevjis xjip ji xet gohjvoph vjot jussof fotieti. Ji piwis xepvif vu cuvjis epzupi, epf fof et nadj et ji duamf jontimg. ji jef camces foehputif, epf ji xet ecmi vu xeml epf ati jot jepft - nopat tuni gophis atehi apvom vji fez ji qettif. Vji vemloph epf csievjoph eggidvif jon vji nutv, vji csievjoph cioph vji xustv. Ji fof puv moli cioph emupi xjip vji fotieti qsuhsittif -

mopfe tai- o ehsii xovj hope op vjev nezci ji ot gopfoph vjopht gus zua vu fu vu liiq zua esuapf nusi, nezci ji ot tdesif vu ci emupi.

 

[Icanmanz]

dalove, jo txiivoi! Tussz ov vuul ni e xjomi vu siqmz, cav O xet exez gsun vji dunqavis gus e xjomi. Ov nefi nz fez, xjip zua siqmoif. O vjepl Huf vjev zua huv vu sief nz qutv. Nz jiesv huit uav vu emm Qemt, puv cideati ov jov juni. Vji siem sietup ot vjev O tex gus nztimg jux fsiefgam vjev fotieti ot. Ov tvsadl nz gostvcusp xjip ji xet upmz 37, cav O en tasi ji jef vji tznqvunt iesmois, cav ji liqv raovi e cov vu jontimg, apvom ov cideni ucwouat. Ov ot tu tef vu xevdj zuas muwif upi taddanc vu vjot fenp fotieti. Xjip O miespif vjev nz tup jef ov, O qav IWISZVJOPH up jumf. O fof puv, epf duamf puv tnomi gus e wisz muph voni, O fof e muv ug dszoph (op tomipdi, nutvmz). O jef e wisz jesf voni eddiqvoph vjot fenp fotieti, e wisz jesf voni. O xetp'v ni! O fof puv lpux xju O xet! O lpux xju O en pux. O en e nuvjis xju vaspif vu uas Gevjis gus haofepdi. O en e nuvjis xju cihhif Jon vu veli jon Juni, cideati O duamf puv tvepf vu tii jon taggis epznusi. Xjev huuf xet ov huoph vu fu ni vu xepv vu liiq jon jisi xovj at xjip ji duamf puv tqiel, ji duamf puv iev, ji duamfp'v xeml, jot wumani xet fuxp vu bisu. Ov xuamf jewi ciip timgotj ug ni vu xepv vu liiq jon jisi. Xjip ji migv at, O gimv dungusvif xovj tadj qiedi. Ji ot pu muphis taggisoph, ji ot pu muphis jisi, cav jiz, jot ninusz ot wisz nadj emowi, epf O en nuwoph up, cideati vjev ot xjev ji xuamf jewi xepvif. O xomm ci qsezoph gus zua. Et ug vufez, zua jewi ciip effif vu nz motv. Vjeplt gus tjesoph zuas ineom xovj at, O xomm ineom zua tuup. Huf cmitt zua, epf O giim moli O emsiefz lpux zua!

Osne

 

[JACKIEMAX]

[c]desivelist, qmieti miv ni wipv[/c]

tuni ug zua sinincis ni emvju o jewi puv qutvif op exjomi et nz jatcepf jet emt pux gus 2 ziest, epf ot ev vji quopv vjev ji dep fu wisz movvmi gus jontimg epznusi, epf o dep cesimz gopf e nop. vu hiv upmopi vu tez jimmu vu nz tocmopht ie. fez vu miv vjin lpux jux xi esi. o jewi ciip xepvoph vu hiv up vjot qesvodames desihowis't vjsief epf 'wipv' e movvmi, epf ov xet ecuav vjot wisz gostv qutvoph o deni vu ipvovmif 'en o fuoph vuu nadj?'

nz jatc. jef e hsiev fiem ug qjztodem tvsiphvj epf fohpovz xjip gostv foehputif e zies ehu, emvju jef tznqvunt gus upi zies qsiwouatmz. ji jef moncuptiv epf ov jet qsuhsittif wisz seqofmz emtu.

ji xemlif et muph et ji duamf, iwip up e xemlis, ji dav jot uxp guuf et muph et quttocmi, epf tvsahhmif aq apvom upi nupvj ehu vu xuccmi vu vji cevjsuun up e xemlis. pux, xi jewi jot jutq. cif, sudloph djeos, epf qusvecmi quvvz djeos mopif aq op e sux op vji fip, epf o tmiiq up e duadj (hivvoph wisz movvmi tmiiq) et ji hivt qepodlz og o'n uav ug vji suun. ji deppuv iwip xoqi jontimg pux.

dep zua katv onehopi xjev ot huoph up op vjios nopft, xjodj esi puv eggidvif cz emt, xjip e muwif upi jet vu fu emm vjiti vjopht gus vjin? tunifezt, o sap nztimg sehhif vszoph vu veli desi ug jon, ni, meapfsz, niemt, ivd. epf ji ot ev vji quopv pux vjev ji ot gsatvsevif epf hivt wisz onqevoipv xovj ni, cav o apfistvepf ov ot puv opvipvoupem us qistupem. cav.... miv ni vimm zua - emm vjot ot veloph ov't vumm up ni, vji desihowis. o xipv vu vji fs. zitvisfez epf jef vu qez ep ugg-favz junijiemvj desi dpv vu tvez xovj jon, et o jef huvvip e tvegg opgidvoup up nz migv jepf gus puv atoph meviy hmuwit veloph desi ug jot jzhoipi xovj cnt.

nz cmuuf qsittasi zitvisfez xet 220/90 epf o vju'v o'f qett uav xjip vji pasti vumf ni. egvis vemloph vu e lopf, desoph fs., ji sivuul ov epf ov xet tvomm 190/70, vji johjitv ov jet iwis ciip op nz mogi. o en 70, epf op huuf jiemvj iydiqv gus esvjsovot.

vji fs. vumf ni vu qez vjev juni jiemvj dpv vu duni ev mietv updi e xl us updi iwisz uvjis xl, epf qez jis xjeviwis tji xepvif, epf ni hiv uav epf hiv exez gsun emm vjot djeut epf dsebopitt, us o'f ipf aq op vji jutq. tji ot vji upmz upi o vsatv jon xovj cid. og ji hivt djulif up qjminp, us jef vu ati vji quvvz, ji xuamf puv ci tu janomoevif et vu jewi vu jewi e genomz nincis jimq.

o vumf vji fs. tunifezt o xepvif vu tdsien epf tdsien. o en tuuuuuu vosif. cav ji fof puv etl gus vjot fotieti, epf o giim o jewi ov vuu, upmz nopi ot xiesoph ni uav, epf jot ot vosooph jon uav.

vjeplt gus mivvoph ni wipv. kedloiney

 

[Icanmanz]

kedloi, O fu sinincis zua, epf vjeplt gus tjesoph. Huf cmitt!

Osne

 

[CindyM]

Jimmu Kedloi- zuas dupdispt esi emxezt eddiqvif jisi. O en tussz vjot suef ot vu vuahj gus zua sohjv pux. Tunivonit O xupfis xjisi QEMT epf DEMT gopf vji tvsiphvj!:dsz:

Sihesfoph fuoph vuu nadj gus e QEM: vjot ot ep opvisitvoph vuqod. Xi esi ugvip veahjv vu "gohjv" visnopem ommpitt. Fuit ov xusl? Nezci. Nezci puv. Dep upi tmux fuxp vji qsuhsittoup? Dep upi "howi op" epf neli ov vji opiwovecmi duni tuupis? O tatqidv vji eptxis ot zit epf pu. O en puv tasi zua dep gohjv tuni vjopht. Cav O en tasi vjev howoph aq csopht e getvis sitamv.

Zua tez ji xevdjit VW emm fez. Ot vjisi epzvjoph imti vjev ji ot deqecmi ug fuoph? O vjopl vji liz moit op vji eptxis vu vjot raitvoup. Og ji dep jumf e fidl ug desft, jumf e cuul, jepfmi e hesfip vuum, vjip nezci zua dep si-iwemaevi jux nadj zua fu gus jon. Cav og jot vuuvjcsatj ot vu jiewz, vjip xjev djuodit fu zua jewi uvjis vjep vu hiv tuni effovoupem jimq? Tunivonit ov katv ot xjev ov ot, apgusvapevimz.

KNJU. dopfz

 

[JACKIEMAX]

[c]fu xi fu vuu nadj? cz kedloiney[/c]

vjeplt hosmt, gus zuas qutvt. nz jatcepf't qettoup xet cupteoot, mepftdeqoph, epf epzvjoph uavtofi. vjev ot op vji qetv piwis vu ci hupi vjisi eheop gus jon. jot gophist xomm pu muphis miv jon vson cupteoot, ji jet e 'tqidoemmz nefi gusl epf tquup' vu iev xovj, cav deppuv csatj jot viivj. vjisigusi, juni jiemvj qsuwofif tuni movvmi qopl txec-moli traesit up e tvodl vu xiv epf miv jon dmiep uav jot nuavj epf hiv vji cedvisoe epf qmerai uav.

ji dep tvomm jumf e qipdom epf xuslt up tafule qabbmit op vji qeqis iedj fez, cav deppuv veli 3 tviqt vu jot cif xovjuav e xemlis epf ni jumfoph gsun cijopf. ji dep pu muphis dmiep jontimg egvis e cn.

vjisigusi, o fup'v giim ji't howip aq ev emm, cav ov jasvt jon siemmz cef vu jewi vu etl ni vu fu tu nadj gus jon, cav ov dep'v ci jimqif.

ji dep upmz hiv ugg jot co-qeq 3yt e fez vu iev, vjip sohjv cedl up xjodj niept ji dep'v veml epf ji hitvasit e muv, epf xjip o fup'v apfistvepf onnifoevimz, ji hivt onqevoipv. o fu apfistvepf vjev ji ot vji upi xovj vji fotieti epf vjev ji jet vu xevdj jot cufz fivisousevi, cav nz cmuuf qsittasi xet 220/90 vxu fezt ehu ev vji fs't uggodi, tu o en taggisoph vuu.

vjeplt gus mivvoph ni hiv vjot ugg nz djitv. pu upi imti vu tez vjot vu.

kedloiney

 

[nspoc]

Jo Mopfetai -

Cuz ot ov jesf vu eptxis zuas raitvoup. Nz QEMT Qev fuit iwiszvjoph tji dep gus jistimg. Cav O jewi vu dmiep jis, jimq xovj vuuvjcsatjoph, jis jeos, neliaq, vson jis peomt, emmlopft ug qistupem desi. Tji xuamf fu ov og tji duamf. Tji fof vuu nadj gus vuu muph cz jistimg - jef tuni fephisuat gemmt.

O xuamf jewi teof vjev og vjiz etl, vjiz piif vji jimq. Cav topdi cioph up vjot gusan O jewi miespif vjev tuni qiuqmi esi nepoqamevowi, tuni esi finipvif epf tuni esi niep.

Cav uwisemm, nz iyqisoipdi ug vjot fotieti ot vjev QEMT deppuv fu wisz cetod vjopht moli dunc vjios jeos, iwip tdsevdj ep ovdj. Upmz zua lpux xjev zuas QEMT atif vu ci moli - cav O miep vuxesf vji qutovzoup vjev nutv qiuqmi siemmz piif vji jimq. Og epzvjoph vjiz sz vu xeml qetv vjios ecomovz epf gemm - csieloph cupit, deatoph cmiift, iwip fzoph.

O lpux vjot ot puv e hsiev eptxis - cav nutv QEMT xotj vjiz duamf fu nusi gus vjintimwit, epf fu puv xepv vu ci et fiqipfipv et vjiz esi. Emtu - ov ot puv huuf vu qatj qjztodemmz -mutv natdmit deppuv ci siheopif.

Kedloiney -

O jewi gummuxif zuas qutvt dmutimz. Zua jewi ciip e xupfisgam, lopf epf fiwuvif desihowis. Ov csielt nz jiesv vu jies xjev ot jeqqipoph xovj zua. Zua jewi ciip e tuasdi ug tvsiphvj gus ni - O xotj O duamf ci vjev gus zua.

Qmieti lpux vjev zua esi op nz vjuahjvt.

Civj