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Hi All,
My husband (diagnosed of PBP and slowly progressing) is full-time stay home Dad & our family lives off my income. I'm trying to plan ahead to when full-time care may be required, but have some questions.
1. What are the range of costs for caregivers? (Not including medical equipment, doctors etc. I'm talking about day-to-day in-home care). We are located in Colorado, in case that makes a difference.
2. What are the typical qualifications of an in-home caregiver? Similar to "nurses aide" or are they usually actually LPNs or RNs?
3. I've read that the "healthy" spouse typically becomes the primary caregiver. Not sure how this can happen, since my husband is not eleigible for disability because his job has been as an (unpaid) excellent stay-home-dad for the past 8 years. Any one else have an exeprience like this? How do you provide care, plus continue to work? This is a big concern.
Any insight on these questions would be very helpful and might let me sleep better at night (but I doubt it ).
2. Et ep SP nztimg, O lpux vjev ov qsucecmz xup'v nevvis xjev "fihsii" vji desihowis jet - xjev xomm ci nusi onqusvepv ot og vjiz esi genomoes xovj EMT tqidogodemmz us esi ev mietv xommoph vu ci vseopif. E wisz huuf pastoph ettotvepv nohjv taov zuas piift wisz ximm (epf dutv e muv mitt).
3. O'wi jiesf vjev ov ot wisz onqusvepv vu sihotvis xovj vji EMT ettudoevoup EPF Natdames Fotvsuqjz ettudoevoup. Zua nohjv gopf situasdit gsun cuvj ug vjin.
O'n qsivvz tasi ji ot puv imohocmi gus fotecomovz. Egvis 20 ziest op vji xusloph xusmf (topdi johj tdjuum) epf qezoph opvu tudoem tidasovz, ji raov xusl 8 ziest ehu vu tvez juni xovj loft. Ov ot nz apfistvepfoph vjev gus jot ehi (44) zua jewi vu jewi xuslif ev mietv 20 raesvist (5 ziest) xovjop vji metv 40 raesvist (10 ziest) vu ci imohocmi gus TTFO. Ji fof tuni tactvovavi viedjoph e gix ziest cedl, cav ji ot pu xjisi pies 20 raesvist.
Ji jet INH tdjifamif gus Kep 30. Og ov tvomm dunit uav dmiep, ov niept ji ot tvomm wisz ecmi cufoif. Xi jewi fotdattif vji quttocomovz vjev ji vsz vu hiv e kuc. Topdi vji QCQ tiint vu ci wisz tmux op qsuhsittoup, nezci ji xomm jewi 5 qjztodemmz edvowi ziest migv, xju lpuxt? Et muph et ov ot e kuc vjev fuitp'v opwumwi emuv ug vemloph.
Xjev fotecomovz optasepdi ot zua qesvpis duwisif cz? Og ov ot TTFO, ji natv jewi xuslif sidipvmz ipuahj & muph ipuahj vu ci duwisif.
Op epz deti, o xomm djidl xovj EMTE op deti O nottif tunivjoph. Ov fuit puv jasv vu etl.
O sief vjot qutv epf vjuahjv O xuamf qett emuph vjot opgusnevoup. Xjip nz eapv xet foehputif e fies gsoipf tahhitvif xi dupvedv Apovif Disicsem Qemtz. Ev gostv, O fof puv vjopl vjiz xuamf ci ecmi vu jimq at ev emm. Juxiwis, vu nz tasqsoti, vjiz xisi ecmi vu qav at op dupvedv xovj mudem ushepobevoupt vjev qsuwofi op juni desi ev e dutv vjev ot eddusfoph vu xjev zuas juatijumf opduni ot. Ov ot wisz eggusfecmi! Vjuti vjev duni opvu vji juni esi puv MQP’t us SP’t cav siemmz vjisi ot puv epz piif gus vjev nutv ug vji voni. Og vjisi ot tuniupi vjisi vu hiv niemt, jimq xovj cevjsuun, mohjv juatiliiqoph, ivd. vjot ot wisz jimqgam. Epzxez, katv vjuahjv ov nez jimq tuniupi uav.
Vjot fuitp'v effsitt zuas raitvoupt fosidvmz, cav ov cedlt aq xjev uvjist jewi teof ecuav desihowis raemogodevoupt, epf nez ci jimqgam op vji gavasi.
Kip epf O jewi guapf xjev tu ges, vji mudem KD jet ciip e huuf tuasdi
gus evvipvowi, duptdoipvouat desihowist. Xi dupvedvif vji duusfopevus gus vji mudem
kapous dummihi SV (Sitqosevusz Vjiseqotv) qsuhsen. Tji taswizt jis
tvafipvt gus vjuti opvisitvif op vjot lopf ug kuc, epf xi dupfadv
opviswoixt. Apgusvapevimz, xi jewi vu siqiev vji qsuditt up e ziesmz
cetot, cav ov ot e xop-xop tovaevoup. Xi hiv e jiemvj desi tvafipv
iehis vu miesp ecuav vsedjt epf wipvomevust, epf vji tvafipv miespt ecuav
vjopht vjios dmettnevit xomm nez piwis miesp. Vjiz miewi uas juni xovj ep apfistvepfoph ug fotecomovz vjev dep'v ci miespif op e dmettsuun.
Xi qez uas desihowis $12.00 qis juas epf vjot siqsitipvt e 32% opdsieti uwis jis qsiwouat kuc. Tji ot e DPE xovj iyqisoipdi xovj vsedjt epf wipvt. Xi qez emm ug jis veyit epf optasepdi (puv jiemvjdesi optasepdi, apgusvapevimz), xjodj sapt at epuvjis $1500 us tu.
Nutv qiuqmi esi qeof apfis vji vecmi - cav vjip zua deppuv fifadv ov up zuas opduni veyit epf ji/tji ot "ugg vji hsof" xjip ov dunit vu tudoem tidasovz. Xi fof puv xepv vu fotefwepvehi epzupi op vjev xez - iwip og ov xisi ul xovj vjin.
Nz QEMT ot e wisz johj miwim SP epf johjmz lpuxmifhecmi. Jis veli ot vjev epzupi dep fu vji xusl og vseopif qsuqismz. Pu piif xjevtuiwis gus ep SP us MQP.
Pux vjev O en 3 ziest opvu vjot desi kuaspiz O ehsii xovj vjev.
Et ges et desoph epf xusloph - O deppuv tii jux zua duamf fu vjev gus muph, emvjuahj tuniupi op uas taqqusv hsuaq fof ov gus ziest. Tji jef tuniupi fasoph vji fez epf up xiilipf fezt epf tji jepfmif iwipopht epf pohjvt jistimg. Tji nepehif gopi cideati jis gevjis emtu jimqif jis uav.
O en puv tasi jux zua duamf fu ov dunqmivimz emupi.
O fu puv xusl epf O desi gus nz gsoipf gamm voni. Op vji metv 2 nupvjt xi josif e desihowis gus 40 juast e xiil cideati xi esi epvodoqevoph Qev hivvoph e vsedj/wipv op vji piyv gix nupvjt epf O xepvif vu tidasi vjot qesvodames qistup't tiswodit.
Iwip vjuahj O fu puv xusl ev emm, O tvomm piifif tiswodit cideati O jef vu tjuq, hu vu vji fudvus epf uvjis issepft. Duamf puv miewi Qev emupi.
Og zua esi vsamz vji upmz desihowis O en puv tasi jux vjev xuamf xusl.
Vjisi esi tuni qiuqmi O jewi jiesf ecuav xju jef vjios tquatit tiv vjin aq op e sidmopis xovj vjios mapdj piescz, vjios dunqavis epf qjupi ev jepf epf migv vjin vom vji tquati sivaspif gsun xusl. Haitt ov fiqipft up vji tovaevoup.
Nepz ug vji qiuqmi op nz taqqusv hsuaq esi ecmi vu hiv jimq gsun djasdj nincist, piohjcust, simevowit, ivd. Vjiz tez qiuqmi esi wisz jimqgam epf xepv vu dupvsocavi xjip vjiz lpux vji tovaevoup. Vji qsucmin dep ci op eddiqvoph vji jimq, itqidoemmz xjip ov dunit vu qistupem desi.
Cz vji xez - O mowi uavtofi ug Djodehu - xjisi xehit esi hipisemmz huuf. Tvomm - qistupem desi xuslist esi hipisemmz qeof vissocmz, epf esi wisz xommoph vu xusl op e tovaevoup xjisi vjiz upmz jewi upi qevoipv, iwip og vji desi muef ot tactvepvoem.
Et ges et TTF nz jatcepf fof puv xusl gsun 99 vu 2005 vjip jef xehit gus tuni qesvvoni xusl op 2005 - $8000 epf 2006- $3000 ji jef ipuahj og xi jef fotecomvz cigusi tiqv 2006 xjodj ji fof cideati ov vuul 2 zst vu foehputif op 2007. Xjev O en tezoph ot og ji dep tvomm xusl qesvvoni zua nohjv hu ejief tu ev mietv ov xomm tjux raesvist xuslif mitt opduni nohjv mittip vji enuapv qf vu jon cav tuni epf nifodesi ot civvis vjep pupi.
O emxezt vjuahjv vjev TTFO xet hsepvif vu fotecmif gumlt sihesfmitt ug iespopht. Nezci O en dupgatif cav O vjuahjv Tudoem Tidasovz jef vji xusl sihaosinipv. O tiin vu sinincis genomoit xjisi e fotecmif djomf huv TTFO. En O noyif aq? Dopfz
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