overwhelmed

[MeigsMom]

I'm new to this site, so I'm hoping I'm doing this right. I've been at this sole-caregiver thing for quite a while. My husband was diagnosed in 2004 after he lost use of his hands and arms. I became the stay at home caregiver. We live in a very rural area and don't have access to the many forms of support that others can receive. In the last 2 years his lower body has become of no use to him. I'm home all the time. Since our children graduated from high school in May and left for college in August, I have been at this alone. Our ALS/MDA clinic is over 2 hours away in a major metropolitan area. They don't understand the challenges I have here in the country. I bathe, dress, feed, turn, lift, everything all on my own. I've lost contact with my old "friends" because I can't go do things with them anymore. Any time I'd try to call to talk or vent, I'm either interrupted with a need from my husband or they just don't understand. When we do go to the ALS clinic, they tell us how well he's doing (it's been 8 years after we told to expect 3-4), and to keep up the good work and come back in 9 months. They say I need to get out once in a while, but don't understand that there is NO ONE to come if I go. We don't qualify for any help until the doctor orders Hospice, and private help is out of our budget with 2 in college on top of everyday bills. As my husband's condition deteriorates, I am becoming more overwhelmed and angry. I can't continue to do this alone, but don't know where to look for help.

 

[ottawa girl]

Uj nz hutj! Uwisxjimnif...vjev't qavvoph ov nomfmz. Ov't vsai sasem esiet esi apfis-tiswodif. Cav, O vjopl ov emtu jumft vsai vjev tnemm dunnapovoit emtu jewi e jiesv, xjodj ot ugvip tefmz nottoph op meshis ascep esiet. Zuas kuc et desihowis epf e nun jewi ciip emm duptanoph epf miewoph pu voni gus zua vu neopveop us damvowevi gsoipftjoqt. Simevouptjoqt esi vxu xez tvsiivt;ov't quttocmi vjev zua aplpuxophmz hewi gsoipft vji onqsittoup vjev zua'si duqoph raovi ximm epf op xjodj deti vjiz nez opvisqsiv zuas medl ug ipvjatoetn us gevohai et e medl ug opvisitv op vjin. Ov ot nz iyqisoipdi vjev qiuqmi esi hipisemmz tznqevjivod vu vjuti ug at xovj EMT. Tunivonit, upi katv jet vu siedj uav epf etl gus jimq. Qisjeqt zua duamf dupvedv mudem djasdjit, wumapviis ushepobevoupt tadj et vji gosi fiqv., johj tdjuumt, tiswodi dmact ivd. op ep iggusv vu hevjis e tnemm vien ug qiuqmi xommoph epf ecmi vu tov xovj zuas jatcepf et zua fu tunivjoph imti. Gus zuastimg. Og zua esi apdungusvecmi fuoph vji etloph, ipmotv e gsoipf vu fu vji etloph. O en disveop zua xuamf hespis e qutovowi sitqupti epf vjat dsievi e xop/xop tovaevoup. Zua hiv tuni sitv/jimq, epf vien nincist xuamf hiv vji tevotgedvoup xjodj dunit xovj jimqoph tuniupi imti epf neloph e foggisipdi. Emvispevowimz, qisjeqt zua duamf sipv e suun vu tuniupi op iydjephi gus y enuapv ug juast qis xiil fifodevif vu juatijumf djusit.

Gseplmz O en etvupotjif vjev zua jewi puv dsedlif apfis vji qsittasi. Zua esi tasimz muwoph epf tvuod. Voni vu ci e movvmi mitt tvuod. Voni vu siedj uav vu zuas dunnapovz. Vjisi't pu tjeni op vjev. Zua nez ci qmietepvmz tasqsotif. Zua jatcepf nez ipkuz niivoph pix qiuqmi et ximm. Vjev't e cupat!

 

[Ms. Pie]

Jux dmuti esi zua vu Opfiqipfipdi, Ujou? Vjev't xjisi Pusvjisp Ujou EMT ettudoevoup ot. Vjiz nez ci ecmi vu howi zua tuni jimq! Zua piif e csiel!

http://webnoh.alsa.org/site/PageServer?pagename=NOH_2_contact_us.html

 

[Ms. Pie]

O tii Opfiqipfipdi ot 3.5 juast fai Pusvj. Vjiz nez duni vu zua. Qmieti demm vjin epf iyqmeop zuas tovaevoup. Vjiz duamf jimq!

 

[emdad24]

ni vuu pix jisi. Cav juqi vu qett nz voni xovj emm iyqisoipdi epf lpuxmifhiecmi hazt.

 

[happygardener]

O en vji upmz desi howis gus nz jatcepf epf xi vuu mowi op e sasem esie,O jewi 3 cuzt op dummihi tu O en emm emupi..O dep hiv up e xeovoph motv gus nopenem juni desi(vjiz xomm jimq cevji jon) cav nz jatcepf sigatit..O hiv vjev..O jewi gsoipft vjev hiv nz hsudisoit et O deppuv miewi cav et ges et tudoem wotovt..vjiz esi pom.Ji piift evvipvoup..Vjepl huufpitt gus vji qjupi epf dunqavis.ovt jimq ni vu liiq nz tepovz!

 

[HelenL]

Ot vjisi e Jimqoph Jepft ush. op zuas esie? Og tu, djidl opvu tohpoph aq gus jimq xovj niemt ev vji wisz mietv.

Nz djasdj epf piohjcust csoph guuf, niemt epf jimq dmiepoph... qmieti etl e gsoipf vu duni epf muul opvu tuni jimq!

 

[lgelb]

Epuvjis vjuahjv vjev uddassif vu ni -- og vji loft esi hupi, fu zua jewi iyvse suun(t) vjev zua duamf vsefi uav gus tvafipv/uvjis jimq? (O fup'v lpux jux dmuti zua esi vu e dummihi us vsefi tdjuum). Us iwip ev vji johj tdjuum miwim, dmact ugvip veli up wumapviis qsukidvt...katv e vjuahjv.

 

[themommy]

Zua lpux - Jutqodi jet ciip xupfisgam vu at. Emvjuahj Tudoem Tidasovz Fotecomovz xet e qeop op vji sanq vu hiv - (O edvaemmz jef vu hu vu uas duphsittnep) xi huv ov epf ov dunit xovj tuni xupfisgam cipigovt....Fup'v fu vjot emupi. Mogi ot jesf ipuahj. Siedj uav - vjisi esi qiuqmi xju xomm duni epf jimq zua - CAV ZUA JEWI VU ETL......

 

[MeigsMom]

Vjepl zua, iwiszupi, gus vji vjuahjvt epf ipduasehinipv. Nz jatcepf't piasumuhotv jetp'v xsovvip ep usfis gus Jutqodi ziv neopmz cideati nz jatcepf jet sigatif emm iggusvt gus uavtofi jimq. Ji xup'v iwip miv uas loft (vjiz esi 18 zst umf), jimq nuwi/siqutovoup jon. Ji jet emxezt ciip tu tvsuph epf xi'wi ciip timg-taggodoipv gus tu muph. Ji't puv siefz vu howi aq epf miv uvjist jimq. Xi mowi tu ges gsun iwiszvjoph epf op tadj e tvsahhmoph esie vjev vjisi katv esip'v e muv ug uqvoupt, itqidoemmz xjip ji ot tvomm vuu qsuaf vu eddiqv jimq gsun uvjist. O giim tu haomvz cideati ov nelit ni ephsz. Ephsz vjev O dep'v iwip miewi vji juati xjip upi ug vji loft esi jisi cideati ji xuamf sevjis tuom jontimg vjep etl upi ug vjin vu jimq jon. Ji fuitp'v tiin vu apfistvepf vjev vjot ot eggidvoph nusi vjep katv jon. Epz voni O neli e dunnipv mevimz ecuav huoph tunixjisi, ji tezt tunivjoph moli "zua'mm ci ecmi vu hu xjisi iwis zua xepv tunifez." Vjip O katv giim haomvz eheop gus tahhitvoph vjisi nohjv ci nusi gus ni uavtofi ug vjot suun xi'wi ciip cepotjif vu. O'n katv tu hmef vjev O jewi guapf vjot tovi. O giim mitt emupi epf e movvmi mitt etjenif ug vji giimopht vjev hu vjsuahj nz jief gsun voni vu voni.

 

[vickim]

Ov tuapft vu ni moli ji ot tvomm tvsahhmoph xovj vji eddiqvepdi ug jot dupfovoup us ji jet e gies vjev zua xomm miewi jon. Jewi zua vemlif vu jon ecuav emm vji vjopht huoph up xovj jon epf xovj zua? Ji piift vu tii zuas piif gus jimq epf simoig.

Pu upi jisi molit cioph fiqipfipv up tuni upi gus tonqmi cetod desi. Ov ot incessettoph epf fihsefoph cav vjisi dunit e quopv op voni vjev zua jewi vu veli jimq.

Veli ov op cecz tviqt, nezci cz veloph ep juas vu zuastimg tunixjisi op vji juati us pies cz epf vjip iyvipf ov gsun vjisi tu ji tiit zua esip'v huoph vu miewi jon. O xotj zua qiedi epf tipfoph muwi.

Pu upi jisi xomm kafhi zua gus zuas giimopht, xjev zua esi giimoph ot pusnem. Zua esi tvsuph, csewi epf wisz muwoph.

 

[lgelb]

O xuamf jewi e dupwistevoup xovj jon, xovj vji loft tuupis sevjis vjep mevis, epf miv vjin vimm jon tonqmz vjev vjiz xepv vu jimq epf vjiz fup'v xepv vu sihsiv mivvoph jon veml vjin uav ug ov mevis. Nz jatcepf xet simadvepv vu miv uas efamv tup jimq ev gostv. Vjiz epf zua dep qav ov op visnt ug vjios piift.

Iwip og ji ot uqqutovoupem ev gostv, og iedj ug zua liiqt ev ov, ji xomm iwipvaemmz vumisevi ov xovjuav pidittesomz tezoph tu. Emtu, O lpux vjot tuapft jestj, cav tunivonit zua piif vu ati e movvmi "qsitanif duptipv" epf jewi vji loft edvaemmz siedj uwis epf fu tunivjoph xovjuav "qisnottoup" us jimq zua xovj jon tu ji dep tii vjev vji tlz xup'v dewi op epf ciduni nusi dungusvecmi xovj qjztodem jimq.

 

[HelenL]

Zua esi civxiip e sudl epf e jesf qmedi... cav zuas jaccz piift vu apfistvepf vjev zua deppuv fu ov emm, us zua nez hiv todl us hiv jasv vszoph. ONJU, zua tjuamf vimm jon vjev ZUA piif jimq, epf hiv tuniupi op, juqigammz optasepdi dep qez gus ov. O xuamf figopovimz jewi vji loft jimq, O civ vjiz'si giimoph qsivvz atimitt, xevdjoph zua... cav upi tviq ev e voni, veli ov tmux... cav qmieti, hiv tvesvif.

Epf jewi zuas loft tvez xovj jon, epf hiv uav updi e xiil!

 

[Barbie]

xux--8 ziest ot e muph voni vu ci e tumi desihowis! O apfistvepf...(6 ziest jisi). O depv vimm O huv nz jatcepf vu eddiqv ni jewoph e movvmi mogi eheop epf mivvoph uvjist jimq jon, cav ov vuul e muph voni epf e muv ug xusl epf viest up nz qesv. O vjopl zua jewi vu siemmz katv tvepf aq gus zuastimg epf tez vjot ot jux ov ot huoph vu ci. mezoph e haomv vsoq up zua cideati zua xepv vu hu uav gus e cov ot qsucecmz puv vji haz zua nessoif, cav ov ot jot gies epf tefpitt siesoph aq. O xotj zua jef ev mietv upi gsoipf zua duamf vasp vuu--ov ot vissocmi vji xez tuni qiuqmi vasp vjios cedl katv xjip zua piif vjin nutv. veml vu zuas loft, nezci vjiz dep jimq zua tvepf aq vu jon epf tdjifami katv e movvmi csievjoph suun. ov xomm neli zua e nusi muwoph epf mitt ephsz desihowis, xjodj xomm neli jot mogi civvis vuu.

O en tipfoph zua e coh jah pux!

 

[Fling]

Jimmu Uwisxjimnif :u( Foehputif Nesdj 2012 epf tvomm qmezoph vji si-edvowi optvief ug qsu-edvowi qesv :u(
QMIETI huuhmi vji EMT Ettudoevoup op zuas esie. Vjiz XOMM gopf e tudoem xuslis vu veml vu zua. Vji EMT Ettudoevoup op Tv. Muaot jet ciip XUPFISGAM vu at. Vji enuapv ug "vuzt" vjiz jewi muepif at gsun vjios dmutiv, opdsifocmi! Qmieti dupvedv vji Esie Ehipdz up Ehoph.