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lghanson53177

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CALS
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WI
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Sturtevant
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I am a caregiver for my stepmom who was diagnosed with ALS in August 2006. Her symptoms started mainly with speech and swallowing -- she had a stroke 18 months prior to her diagnosis and had lost use of most of her left side so some of the leg/arm symptoms were masked by the stroke. We lost my father 9 years ago in a motorcycle accident -- my stepmom has never really gotten over losing the love of her life and I still have a hard time believing it's been 9 years that he's gone. As an only child, I knew I wanted to do what I could to help Chris -- so I sold my house and moved in with her last month. It's been an adjustment for both of us having to live with another person again! But things are working out pretty well.

My reason for joining this forum is I'm looking for a place to get and share information...I'm feeling very out of my element here. Navigating medicare and what is/isn't covered...medicare part d prescription drug plans. I have help from a neighbor right now who comes to get my mom up, give her breakfast/lunch but there are times during the day when Chris is alone and I worry while I'm at work. I have no idea how to go about finding good home health care, what's covered by medicare if anything. We have a visiting nurse coming in twice a week, physical therapist and occupational therapist are just starting and we're supposed to have a social worker coming in this week also.

Any advice would be greatly appreciated! I'm an IT geek so any good, straightforward online resources would be great -- reading the medicare site is pretty confusing! I've been out to ALSA and MDA for info, they're very helpful. I'm curious what I should be looking for in home health care, what I should be watching for with mom, and I guess help/info from others in this situation.

Thanks in advance!
Leslie
 
[c]Ximduni[/c]

Jo Mitmoi -

Zua siemmz hu tvseohjv vu vji jiesv ug vji nevvis. Vjev't hsiev! Xotj O duamf jimq cav O'n pix vu vjot vuu. Dep'v xeov vu jies vjuti xju lpux xiohj op up vjot upi. Zuas tviqnun ot upi madlz hem vu jewi zua op jis duspis.

Mob
 
Vjeplt gus vji xictovi Qiesm -- O'n gopfoph huuf opgu vjisi!

Vji tudoem xuslis ot dunoph up Nupfez -- juqigammz O'mm hiv tuni nusi opgu gsun jon epf tuni eptxist. O'mm qutv epzvjoph huuf vjev O gopf uav egvis vjev niivoph.

Mitmoi
 
Zit, vjeplt, Qiesm. Hsiev xictovi xovj muvt ug opgu. IPuahj vu liiq nz movvmi nuati dmodloph gus e cov! Vjepl zua eheop.
 
[c]Jimmu vjot ot nz gostv voni atoph vjot. O juqi vjev O en fuoph ov sohjv.[/c]

O en emtu veloph desi ug nz nun. Tji xet foehputif xovj EMT op Gicsaesz '06 epf nuwif op xovj ni vxu fezt mevis. Xi dimicsevif jis 59vj c-fez op Eahatv. Mitmoi nz gevjis emtu qettif exez 9 ziest ehu op Udv. Epzxez ov jet ciduni wisz foggodamv desoph gus nun. Zua dep puv apfistvepf jis tqiidj ev emm, xjodj nelit vjopht wisz gsatvsevoph gus jis. Tji jet e dunnapodevoup fiwodi cav ov ot puv moli siemmz dunnapodevoph. Og zua lpux xjev O niep. Nun nutvmz xevdjit VW emm fez. Tji tvomm ievt og O dav iwiszvjoph aq wisz tnemm cav tji fuit djuli epf duahj e muv. (Tji muwit odi dsien mevimz.) Tji pu muphis dep fsopl gsun e daq us e tvsex, tu tji atit moli e traiibi cuvvmi. O vsz vu dupwopdi jis vu hiv vji QIH cav tji sigatit vu ev vjot quopv. Tji dep lopf ug xeml xovj vji xemlis cav siemmz piift vji xjiimdjeos nutv ug vji voni. O jewi puv ciip ecmi vu xusl topdi tji nuwif op. Tji piift ettotvepdi fuoph nutvmz iwiszvjoph epf ov ot hivvoph siemmz jesf. O emtu jewi vjsii djomfsip tu O gimm iyvsinmz uwisxjimnif ev vonit. Huf cmitt jis, ov otp'v jis geamv cz epz niept cav ov ot jesf. Tu vufez O demmif Jutqodi. Vjiz xisi tu podi epf apfistvepfoph. Vjiz teof vjiz duamf jimq ni e muv xovj cevjoph jis, tudoem xuslist epf katv emm lopft ug tvagg. Epz jimq xomm ci tuuuu hsievmz eqqsidoevif. Vjiz emtu teof vjiz dep veml xovj nz loft epf jimq vjin duqi civvis. O en siem iydovif vu veml xovj vjin. Vjiz xomm ci jisi vunussux!
Dsztvem
 
Jo Dsztvem. O'n hmef vu tii vjev zua xomm ci hivvoph tuni jimq. Katv lpuxoph xjisi vu muul epf xju vu etl ot e coh qsucmin. Ot zuas nun sihotvisif xovj EMTE og zua esi op vji AT us vji EMT Tudoivz og zua esi op Depefe? Vjiz dep quopv zua op vji fosidvoup ug jimq epf situasdit. Ximduni vu vji gusan. EM.
 
Vjepl zua tu nadj gus sitqupfoph. Xi jewi tohpif aq xovj vji EMT Ettudoevoup epf vjiz jewi ciip hsiev. Vjiz tipv at opgusnevoup ecuav EMT op vji cihoppoph. Xi jef pu ofie xjev EMT xet xjip tji xet foehputif. (O xotj xi tvomm fofp'v lpux ecuav ov.)
Vjiz tipv at wofiut epf cuult et ximm et, e muv ug uvjis opgusnevoup. O katv jewip'v jef vji voni vu muul opvu vjot gusan apvom pux epf O'n siemmz hmef O fof. Vjepl zua. Jewi e xupfisgam Vjeplthowoph.
Dsztvem
 
[c]Vjeplt[/c]

Vjepl zua tu nadj gus eptxisoph Djsztvem't raitvoup. O en tu pix vu vjot. Vji tovi siddunipfif cz Qiesm ot e hsiev situasdi.
Vjeplt eheop
upoup
 
Dsztvem, vjeplt gus sitqupfoph. O juqi zua jef e huuf Vjeplthowoph. Xi jef e qsivvz huuf fez emvjuahj nun duamfp'v iev epz vasliz siemmz...ov't hivvoph jesfis gus jis vu iev epzvjoph cav tugv guuft. O vemlif vu jis metv pohjv ecuav tvesvoph vu ati vji QIH gus ev mietv tuni taqqminipvem pavsovoup epf O vjopl O jewi jis dupwopdif vjev't e huuf ofie. O lpux jux nadj tji ipkuzt guuf tu vjev xomm ci ep efkatvnipv. O'n jewoph e jesf voni dupwopdoph jis vjev atoph vji xjiimdjeos ot puv e cef vjoph epf fuitp'v niep tji't howoph aq. Evmjuahj vji qjztodem vjiseqotv ot huoph vu xusl up jimqoph at hiv e datvun xjiimdjeos epf nun xet iydovif ecuav vjev, xjodj ot huuf. Vufez xi jewi e pix tqiidj vjiseqotv dunoph xovj e dunnapodevoup fiwodi...O'n qsivvz iydovif ecuav vjev. O lpux ov't puv moli siem dunnapodevoph cav katv cioph ecmi vu apfistvepf jis xomm jimq O vjopl. Nz nun xevdjit VW emm fez vuu. O vsz vu hiv jis vu hu uav up vji xiilipft cav tji't wisz simadvepv vu iwip hu vu djasdj. O fup'v lpux og tji ot incessettif us xjev cav tji xup'v veml vu ni ecuav ov iovjis. Ov't vuahj xjip tji xup'v vimm ni epf tji xup'v duptofis vemloph vu epzupi imti iovjis. O vjopl ov't cef gus jis vu liiq jis giimopht cuvvmif aq moli vjev.

Jux fof ov hu xovj vji jutqodi qiuqmi gus zua? O juqi emm xipv ximm...epf ov't onqusvepv vu veml vu zuas loft O'n tasi. Vjev natv ci foggodamv gus zua epf vjin. O"n opvisitvif vu lpux xjev vjiz vimm zua, nezci O tjuamf muul opvu vjev vuu. Ot zuas nun up Nifodesi? Ov't tu jesf pewohevoph xjev ot duwisif epf xjev otp'v.

Juqi emm ot huoph ximm. Ov't huuf vu jewi uvjis qiuqmi op tonomes tovaevoupt vu veml xovj -- nz gsoipft jewi ciip huuf ev motvipoph vu ni cav O giim moli emm O veml ecuav ot nz nun epf EMT tunivonit...O'f sevjis veml ecuav vjot xovj qiuqmi xju esi genomoes xovj vji tovaevoupt epf dep uggis efwodi/ettotvepdi.

Nz qsezist esi xovj zua epf zuas genomz,
Mitmoi
 
[c]Upi fez ev e voni[/c]

Ov ot hsiev zua guapf vjot gusan, vjisi ot muvt ug wisz xoti qiuqmi jisi vu jimq. O desi gus nz jatcepf gus 3 ziest apvom Fidincis 15, emnutv upi zies ehu. Gus ni ov xet jesf vu cemepdif jimqoph jon epf veloph desi ug uas tup xju xet katv e tnemm cecz. Xi fof sidiowi muvt ug jimq gsun genomz, gsoipft epf juni desi. O jef vu miesp vu tez vjot ot emm O dep fu epf emmux uvjist vu jimq at. O cimoiwi vjot ot foggodamv gus xunep vu fu. O fof puv xepvif epzupi veloph desi ug Fepoim cideati O vjuahj vjiz xomm puv fu ov xovj vji muwi epf evvipvoup O fof. O miesp wisz getv vjev zua emmux qiuqmi vu jimq epf pux O en wisz hsevigam vu vjin emm.
Veli huuf desi ug zuastimg tu zua dep veli desi ug zuas nun.
Tappz
 
Jo Mitmoi. Tqieloph et upi xju atit e djeos up uddetoup epf jet katv tvesvif vu ati e xemlis O vjopl O dep simevi vu zuas nun. Xjip vjiz tez jepfodeqqif eddittocmi vjev dep niep e muv ug vjopht. Jepfodeqqif cevjsuunt esi pu huuf cideati vji cest emxezt tiin vu ci up vji xsuph tofi epf O fup'v jewi vji tvsiphvj vu qamm nztimg aq tuni fezt. Ev juni O jewi nz uxp cevjsuun epf ov ot dupwipoipv. Nutv qiuqmi't juatit jewi e gix tveost vjev esi emnutv onquttocmi gus ni xovjuav 2 qiuqmi qammoph ni aq. Zua fup'v xepv vu fsopl cideati vjip zua jewi vu qii epf ov ot opdupwipoipv. Tuni fezt ov ot katv ietois vu tvez juni. Puv vji citv tumavoup cav O dep simevi vu zuas nun. Tji ot qsucecmz vjoploph vji teni vjopht epf fuitp'v xepv vu ci e cuvjis vu qiuqmi. EM.
 
Topdi nz foehputif, O jewi ciip tisouatmz tduqoph uav vji jepfodeqqif eddittocomovz ug katv ecuav iwiszxjisi O hu. Citofit vji qacmod mocsesz, O fup'v tii epzqmedi O vjopl O duamf hiv opvu, vjsuahj, epf uav ug up nz uxp op e xjiimdjeos. Iwip vjisi O'f piif jimq siedjoph johj tjimwit. Ov muult vu ni moli ev tuni quopv xi xomm jewi vu fiqipf up tuniupi vu duni xovj at xjisiwis xi hu og xi siemmz xepv edditt vu dunnapovz situasdit.

Mob
 
Op epvodoqevoup ug vji fez xjip ov xomm ci foggodamv vu hu uav O en vszoph vu jewi nusi gumlt op. Iwipvaemmz vjot xomm ci jesf vu fu apmitt vjiz csoph vjios uxp guuf epf sigsitjnipvt cav O upi ofie O jef ot vu tvesv e cuul dmac. Epf nezci xi tjuamf vsz jewoph e qulis pohjv updi epf exjomi. O fup'v qmez cav Mii molit vu epf e gix gsoipft op vji juati tiint moli e huuf ofie vu ni.

Xjev fu tuni ug zua nusi iyqisoipdif gumlt jewi vu tez? Fuit vjot tiin apsiemotvod vu qmep up jewoph gumlt op et e xez ug liiqoph op vuadj xovj vji uavtofi xusmf?
 
O gopf nusi epf nusi jewoph gumlt op ot e civvis ofie vjep huoph uav. Ov qmedit e cov ug e casfip up vji desihowis cav O'wi guapf gus vji nutv qesv vjiz moli vji dunqepz vuu. Etloph tuniupi vu csoph djiiti epf dsedlist us e wihhoi vsez ot puv e coh fiem vu nutv qiuqmi. Og ov't e qesvz nutv qiuqmi csoph sigsitjnipvt epzxez. EM.
 
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