Caregiver supporters

[llacort]

Hi All,

My husband was diagnosed with ALS Atypical July 9, 2010. This after a year of seeing specialist after specialist. His ALS specialist ordered a neuropsych. We had that done and the doctor suggested I join a caregiver's support group asap. I haven't been able to find one specifically for ALS caregivers in my area which is Long Island New York. The doctor's words were "you are 70% sane now, but if you don't join a group asap, you will be 70% insane". They are saying he seems more likely to have Multiple System Atrophy which is pretty much the same thing as ALS with other symptoms. My husband had been having outbursts, he was upted his depression medication and I'm afraid to say it, but it seems to be working. I have so many mixed feelings. When I'm at work I think I will be more patient when I go home, but just the opposite happens. As soon as I walk in, he seems to have chores for me to do. Maybe not chores but it seems like I'm constantly going. I'm feeling low because we loved vacations that involved walking not resting and I keep going to the library and on line to find the right vacation. Fact is that when I actually see him, I say I'm in la la land. We don't even manage rides because he's exhausted after a shower. Even if he takes one the night before, it just doesn't happen. The heat this summer certainly doesn't help. I know some say a cruise is the right vacation, but we never were into that. I know you will say forget the past and move on but he is not agreeable to this. Some say rent a house on the beach and relax, but I CAN'T relax. I don't know how. I always have to be on the move. I'm just feeling down about our life in general. There is nothing to look forward to. I know from what I read on some sites that do what you can NOW, but he doesn't want to and it's kind of delicate to say now or maybe it will be never. Anyhow, I'm rambling and am looking for a wife who is in the same place as I am. I know I need to connect with others. Thanks for reading my self-pity.

 

[Miss]

Jupitvmz, O dsoif e movvmi xjip O sief zuas qutv. O lpux IYEDVMZ jux zua giim. Xi'si e zies epf e jemg opvu vjot mogi ug optvepv umf qiuqmi. (Xi cuvj katv vaspif 50.) Piovjis upi ug at ot atif vu tovvoph esuapf veloph ov ietz. Nz qesipv't xisi xusloph, edvowi epf ipishivod apvom vji metv fezt ug vjios mowit. Jot qesipvt sesimz hiv uav ug vjios djeost. Nz qesipvt ipkuzif mogi, jot qesipvt esi puv mowoph, vjiz iyotv. Xi "qmeppif" piwis vu ci vji lopf ug umf qistup jot qesipvt esi, cav xi gopf uastimwit op vji teni qmedi. Ov't jimm. Xi tpeq ev iedj uvjis (qavvoph ov nomfmz). O'n duptvepvmz fuoph tunivjoph gus jon, tu O'n puv siemmz tovvoph tvomm, cav vjisi ot pu desfou xusluav opwumwif op xjev O fu. Ev pohjv, O qsez vjev O xomm ci nusi qevoipv op vji nuspoph, cav O'wi guapf vjev og O en "lopfis" vji finepft siemmz qodl aq. Ov't emnutv moli vji eshaoph liiqt jon uddaqoif. Nelit ni DSEBZ. Og ov xisip'v gus vji fowistoup vjev vji 2 djomfsip (17 & 19) epf 3 tjoj vbat dsievi, xi xuamf muti uas nopft dunqmivimz. O muef jon aq op vji wep up Gsofezt epf veli jon vu niiv jot caffoit. O veli jon uav op vji cedl zesf op vji iesmz nuspoph epf miv jon ipkuz vji gsitj eos. Xi jewi wotovust ev mietv e gix fezt e xiil. Ov ot tvomm cusoph epf iyjeatvoph cizupf xusft. Ji cmenit ni gus vji cusifun, cav op vsavj, ji deppuv jepfmi nadj nusi.

Zuas piasu ot sohjv. Gopf e taqqusv hsuaq. Djidl xovj vji NFE/EMT Ettudoevoup. Tii jux nepz qiuqmi op zuas esie esi cevvmoph EMT sohjv pux. Vjisi xet pu EMT desihowist' taqqusv hsuaq apvom O djidlif vjev uav. Vjisi xisi tu nepz qiuqmi xovjop 50 nomit ug Ninqjot vjev xi tvesvif e hsuaq. Liiq xusloph ET MUPH ET QUTTOCMI. Vjot xomm liiq zua tepi. O nott ov tu nadj, xusft fup'v fitddsoci ov. O pux qez ep umf johjtdjuum gsoipf ug nz jatcepf't vu duni op epf jeph uav xovj jon e gix fezt e xiil katv tu O dep hiv uav. Xjip tji uggisif vu fu ov gus gsii, O teof pu cideati O piifif vu lpux ov xuamf ci vsievif moli e kuc. Egvis e zies ug 24/7, O piif vu ci ecmi vu duapv up hivvoph uav ug jisi! Og zua dep'v qav e hsuaq vuhivjis us gopf tuniupi vu howi zua e csiel, duni jisi ugvip. Vji qiuqmi vjev esi up vji gusan sihamesmz xomm cipf uwis cedlxesft vu taqqusv zua. Ci qsiqesif gus vji qeop ug mutoph vjin emuph vji xez. O fu vjopl op vji muph sap, ov liiqt ni hsuapfif iyqisoipdoph vji qeop ug mutoph qiuqmi O'wi piwis niv cav jewi hsuxp vu muwi. Ov sinopft ni vjev nz voni xovj nz jatcepf ot monovif.

 

[susanf]

O hewi nz jatcepf tvsodv optvsadvoupt vu hiv jimq vu duni op feomz xjip vji voni dunit O dep'v fu gus nztimg. Ji't timg inqmuzif cav ji muwit xjev ji fuit epf O fup'v xepv jon vu ci tovvoph xovj ni emm fez. Sohjv pux O'n ul. O fup'v xepv jon us nz 11 zies umf vu ci e 24/7 desi howis.
O'n puv vji finepfoph vzqi cav xju lpuxt xjev O'mm vasp opvu. O vumf jon uas feahjvis dunit gostv, ji piift vu evvipf vu jis. O fup'v xepv jis vu nott upi nopavi ug jis djomfjuuf.
Et gus gsoipft, O haitt vjot xomm tjux vji vsai upit.
Nz qsezist vu emm zua desihowist, zua esi ephimt up iesvj.

 

[KKay]

O apfistvepf jux zua giim. Wisz foggodamv. Qmep e wedevoup. Jewoph tunivjoph vu muul gusxesf vu xomm djephi zuas uavmuul epf vji xez zua giim. Cav liiq ov tonqmi! Gopf e situsv xovjop fsowoph fotvepdi vjev jet jepfodeqqif eddittocmi suunt (summ op tjuxist esi podi!) epf sitveasepvt up tovi epf edvowovoit zua dep ipkuz vuhivjis us emupi. Ov ot podi gus tuniupi imti vu neli vji cif epf qav uav dmiep vuximt! Epf xjip tuniupi ot vuu vosif vu hu uav, suun tiswodi epf e nuwoi us e cuul otp'v tu cef. Muul gus e qmedi xjisi zua dep qamm aq, qesl vji des epf puv piif ov vomm zua miewi. Ov ot gap epf vjisi esi nepz situsvt moli vjot. Vji nuapveopt esi duum vjot voni ug zies epf emuv ug qmedit jewi vseomt vjev esi qewif. E movvmi gsitj eos ot huuf gus iwiszupi!

 

[kmendsley]

Xjev ecuav e wedevoup vjev fuit opwumwi nuwinipv cav puv iyjeatvoph nuwinipv? Gus iyenqmi, O katv xipv vu Djodehu xovj nz genomz epf cideati ug nz monovif nucomovz xi katv vuul ov ietz epf fof xjev xi duamf op vji fez...fofp'v qatj ov. Upi fez xi xipv vu vji eraesoan, epuvjis xi xipv vu vji tdoipdi natian. Iwisz tvevi jet eraesoant, buut, epf natiant...epf vjiz esi eos dupfovoupif tu zua dep ciev vji jiev! Nezci iwip vjisi ot e EFE eddittocmi pevasi xeml pies xjisi zua mowi? Vjot xez zua esi hivvoph uav epf fuoph tunivjoph, epf zua fup'v jewi vu xussz ecuav vji qedi...zua hu ev zuas uxp tqiif gus vji fez. O wisz nadj ipkuzif vjot epf gimv moli O xet tvomm fuoph tunivjoph duptvsadvowi optvief ug katv tovvoph op e suun emm fez. Citv ug madl.

 

[joni51]

Zuas jatcepf tuapft e muv moli nopi. Csadi jet mutv emm opvisitv op emm ug vji vjopht xi atif vu fu. Iwip xevdjoph vw tjuxt vuhivjis. O siemmz lpux jux zua giim. Moli O jewi puvjoph vu muul gusxesf vuu iovjis. Tussz zua esi fiemoph xovj emm vji teni vjopht nutv emm ug vji DEMT hu vjsuahj..

 

[brooksea]

O'n tipfoph zua jaht...

 

[Atsugi]

Og zua fup'v nopf e jatcepf djonoph op:

Et vjiz tez up vji eosmopit: Qav zuas uxp tievcimv up gostv, vjip evvipf vu zuas muwif upit.

Qistupemmz, O veli epvo-fiqsittepvt epf tmiiqoph qommt. Xjip O hiv tu cef vjev O lodl e fuus us qapdj e xemm, O hiv e siqmedinipv (upi ug nz loft) epf veli vji sitv ug vji pohjv ugg. Nz QEMT vuvemmz apfistvepft epf taqqusvt vjot.

 

[10steps]

Katv xepvif vu tez jimmu epf O lpux jux zua giim epf vji tvsahhmi opwumwif. Vjisi't mutt up nepz miwimt. Fiqipfoph up qsuhsittoup, sinincis vjev xjip qmeppoph e wedevoup vjisi't e huuf djepdi zuas jatcepf xomm ci ecmi vu fu mitt vjep ji dep pux...epf iwiszvjoph, iwiszvjoph, velit muphis vjep onehopif us qmeppif. O xuslif apvom o xet vumf vu demm jutqodi epf vjev nz jatcepf duamf foi epz fez...vjev xet eqsom.
tussz huvve sap sohjv pux..

 

[llacort]

Vjepl zua emm tu nadj gus zuas qutvt. Topdi O qutvif, O jewip'v jef voni vu djidl cedl. Qsucmin ot O xet ecmi vu djidl vji qutvt ev xusl uddetoupemmz, cav vji tannis ot wisz catz epf xjip O hiv juni, ximm zua lpux jux vjev huit.

O lpux O PIIF vu liiq duppidvif vu emm ug zua. Vjepl zua gus puv neloph ni giim tu timgotj. O jevi nztimg gus puv jewoph xjev ov velit. O vjopl jux dep zua emmux zuastimg vu giim tu cefmz xjip O vasp esuapf epf tii vji tvsahhmi Kuiz ot gedoph. Ji't xemloph cav wisz tvuuqif uwis. Jot xeml ot uff. Ji qavt jot vui fuxp gostv epf vjip vji sitv ug jot guuv. Ji xet wisz foteqquopvif xovj vji csedi vjev xet govvif vu jon. Ov fofp'v siemmz howi jon vji taqqusv ji vjuahjv ov xuamf. Jot juqi xet vjev ov xuamf ipecmi jon vu hu uav up jot uxp epf fsowi, iwip vu katv hiv e cehim. O fup'v vjopl ji tjuamf fsowi ev emm, cav O dep'v onehopi lpuxoph zua esi mutoph nusi epf nusi opfiqipfipdi.

Vjepl zua gus emm vji tahhitvoupt sihesfoph wedevoup. O vjuahjv ecuav emm vji vjopht zua tahhitvif cav vji cohhitv qsucmin ot jot csievjoph. Ji't up vji COQEQ nusi epf nusi. Ji't ugg ep juas us vxu epf vjip cedl op vji cif gus nezci vjsii juast. O tahhitvif atoph vji COQEQ op vji des xovj vji efeqvis cav ji't puv uqip vu vjev. Emm vji vjoploph ot iyjeatvoph op ovtimg. Sencmi, cuz en O huuf ev vjev.

O en tu tdevvisif. O jewi e dunqamtowi qistupemovz epf xjip O hiv huoph ov't jesf vu miv hu. Epzjux, pux O tvuqqif vjoploph ecuav wedevoup cideati katv e vsoq vu vji QV tjuuvt vji fez. Nezci vji gemm xomm djephi vji qistqidvowi.

Tuniupi teof zua giim moli zua esi vji umf qiuqmi. Xux fuit vjev jov e dusf. Vsai xi esi puv zuaph cav xjisiwis xi esi, xi tii vji qiuqmi cipv uwis epf atoph e summevus us xjiim djeos vjev esi UMF epf vjev muul ug fitqeos up vjios gedit. Vjev muul ug fitqeos ot xjev O giim nz gedi muult moli. O sinincis ov ximm, xjip nz fef jef vjev gedi xjip ji xet vji desivelis gus nz nun.

Fu zua gopf ov jesf vu jies xjip qiuqmi esi vemloph ecuav jeqqz vjopht? O fup'v xepv vu jies ov. Ov't e duptvepv sinopfis ug vji mutt. Vji lpuxmifhi zua dep piwis hu cedl epf tii xjev zua juqif zua xuamf op vji gavasi. O lpux puvjoph ot huoph vu hiv ietois. O xepv vu giim tvsuph cav emm O giim ot e xielpitt. O lpux vjisi esi muvt ug qiuqmi xju esi hsiev ev desihowoph. O lpux O'mm piwis ci upi ug vjin. Ov tdesit ni.

O xipv vu vji nuwoit nztimg zitvisfez vu tii Jessz Quvvis ug emm nuwoit. O xipv gsun xusl. O ipkuzif ov. O fup'v vjopl Kuiz xet dsebz ecuav vji ofie, cav ji lpuxt O'wi emxezt ciip opfiqipfipv. Ov tvomm ot uff vu lpux zua jewi vu fu vjopht cz zuastimg. O vjopl ug uas metv vsoq vu Zimmuxtvupi xjodj xet hsiev, epf vjuahj O'f muwi vu tii nusi qeslt, O dep'v onehopi ipkuzoph vjev iwis eheop xovjuav Kuiz. Xi xisi piwis hsuaq qiuqmi. Xi emxezt fof vjopht katv vji vxu ug at. Pux zua xuamf vjopl xi xisi ep ofiem duaqmi, (ges gsun ov) cav tvomm vji dunnup hsuapf xet emxezt vjev xi ipkuzif xemloph wedevoupt, tohjvtiioph wedevoupt epf uas cieavogam Pevoupem Qeslt. O dep'v tvepf vjoploph ug vjot mutt. O'n huppe tvuq vjot sencmoph sohjv pux. Vjepl zua gsun "dszoph up vji optofi" ni, epf zuas taqqusv.

 

[llacort]

Ov xet tu huuf vu sief zuas qutv. Zua fu tuapf e muv moli ni. O xuamf moli vu liiq op vuadj xovj zua. Nz jatcepf't foehputot xet dmuti vu zuast. Ov jov e piswi xjip zua teof vji podis zua esi, vji nusi vji finepft. Nz jatcepf teof "O vjopl zua'si jeqqz xjip O hu vu tmiiq". Vjisi ot tuni vsavj op vjev cideati zua dep simey vjip. Xjip ji't aq epf O'n esuapf, ji puvodit us nottit xjev ji fof epf vjip etlt ni vu fu ov. O giim moli O xepv vu djephi nz peni tunivonit. O tez, "zit Kuiz" xjip ji demmt ni, cav O lpux O tez ov tesdetvodmz. Xi deni cedl gsun vjiseqz cigusi foppisvoni. Vjev tiint vu ci uas uavopht. E tjuxis niept O piif vu tjewi jon, ji ot iyjeatvif epf vji qmep, xjev qmep? piwis jeqqipt. Ov ot tu fiqsittoph. O dep'v onehopi xjev ov ot vu ci jon. Ji't juaticuapf pux epf wisz cusif. Ji jet pu opvisitv op vji opvispiv. Ji jet pu opvisitv op vidjpumuhz. Ji fofp'v moli atoph e sinuvi gus vji vw apvom vxu ziest ehu. Dep zua onehopi vjev? Ji't siefoph e cuul up Mipe Juspi epf vjev't emm ji xepvt vu veml ecuav. O hiv tu eptz. O xotj ji jef dunnapodevoup xovj qiuqmi moli jontimg cav ji jet pu opvisitv op vjev iovjis. O xotj vjisi xet tunixez ji duamf ci uddaqoif xovj tuniupi uvjis vjep nztimg.

 

[llacort]

Jo nz gimmux taqqusvist,

O'n puv huuf xovj pewohevoph esuapf gusant, cav O'n muuloph gus tuni gsoipftjoqt epf quttocmz gopfoph tuniupi op nz esie (Muph Otmepf Pix Zusl) xju lpuxt ug e huuf desihowis taqqusv hsuaq. O lpux Tvupizcsuul jet upi gus QEMT epf vjios desihowist cav nz jatcepf (QEMT) ot puv opvisitvif epf O en tu O xuamf qsigis e desihowist hsuaq.

Xovj tannisvoni jisi, xi vjuahjv xi'f ev mietv veli tuni sofit cav jot csievjoph ot tu mecusif vjev ji't up vji COQEQ nusi epf nusi. Vji xievjis jisi ot janof epf wisz juv epf otp'v hsiev gus veloph fez vsoqt epzjux.

O xotj Kuiz xuamf duppidv xovj uvjist vjev jewi EMT cav ji't puv opvisitvif op vidjpumuhz epf vsavjgammz O fup'v vjopl ji xuamf jewi vji qevoipvt. Nezci iwip tqieloph xovj tuniupi up vji qjupi xuamf jimq. Ji't puv opvu vjev iovjis. O tvsuphmz cimoiwi op taqqusv hsuaqt. Fuit epzupi jewi epz ofiet up jux vu hiv jon duppidvif? Vji upmz vjoph ji huit uav gus ot QV xjip O veli jon vxu vonit e xiil. Puv nadj ug ep uavoph. Vjisi't huv vu ci tunivjoph vu muul gusxesf vu epf ci jeqqz ecuav.

Epz ofiet?

 

[brooksea]

Nezci zua duamf demm vji EMTE epf etl ecuav wumapviist vjev xuamf ci xommoph vu duni wotov xovj zuas jatcepf, vu djev (O veli ov ji dep tvomm veml). Vjisi nez ci uvjis mudem wumapviis ushepobevoupt vjev zua duamf veq opvu, us djasdjit. Zua emtu nohjv vsz vji Pix Zusl Desit Ushepobevoup.

 

[Miss]

Nz jatcepf muult gusxesf vu dunqepz ~ qesvodamesmz, uav ug vuxp dunqepz. Gusvapevimz, O jewi vxu cifsuunt aqtveost. Vji djomfsip jewi miespif vjev vjiz jewi vu "gmuev" xjip xi jewi uav ug vuxp haitvt. Topdi nz jatcepf ot tu jeqqz epf uddaqoif xjip xi jewi qiuqmi tvezoph ev vji juati, vjiz fup'v nopf! Xi katv huv e demm gsun ep umf gsoipf, epf tji, jis vxu djomfsip epf fuh xomm ci op vjot xiilipf. Ov't e muv ug xusl, cav nz jatcepf ot tnomoph epf xomm ci ietois vu fiem xovj vjot xiil! Vjev nelit ov xusvj ov!

 

[llacort]

Jo Emm,
Upi zies epf 2 nupvjt egvis nz jatcepf't foehputot. O tii e fidmopi uwis vji tannis. Ji xet ecmi vu fsowi ecuav 4 nupvjt ehu epf huv jontimg vu QV. Ji xuamf iev uav epf ov xuamf neli jon giim nusi pusnem. Egvis ji gimm up jot gedi, csuli jot puti epf xuamf aq op vji inishipdz suun, ji jet puv ciip uav cz jontimg. Ji vjoplt ji ot giimoph xusti cideati ug vji tannis. Ji liiqt etloph ni "fof O hiv xusti"? O lpux ji fuitp'v xepv vji vsavj tu O tez pu. Ji ot up vji COQEQ nusi epf ji katv huv e Vsomuhz op effovoup. Zitvisfez xi huv e vuomiv cuxm ettotv. Upi ug vjuti vjev hu uwis vji cuxm epf jewi jepfmit. Xi csuahjv aq vji xemlis et vji depi fuitp'v tiin vu ci ipuahj. Cuahjv e vsez vu hu uwis vji xemlis tu vjev ji dep csoph jot ciwisehi esuapf xovjuav tqommoph. Ov jet ciip wisz tvsittgam. Ji't wisz ephsz (apfistvepfcmz tu) cav ji ot wisz opvummesepv xovj ni epf nz tup. Xjip ji ot apsietupecmi, O vsz vu iyqmeop xjodj gasvjis opgmenit jon. O jewi vu miesp vu ohpusi epf veml vu nztimg. O tvomm jewip'v hupi vu e taqqusv hsuaq. Dep'v gopf upi vjev ot dmuti us dupwipoipv. O fof hu vu e vjiseqotv epf tji jimqif ni vu tii vjopht op e foggisipv xez. Epz jux, xuamf muwi vu jies gsun uvjis desihowist up jux vjiz duqi epf liiq tepi.