Just trying to stay ahead of the runaway ALS Train!

[Pollyanna]

Help! I'm my husband's caregiver and have nobody coming in to help at this time. So far we've been able to stand him up long enough to transfer to the toilet and back to his recliner/lift chair. But this week his legs and arms are so weak, he can no longer stand, so I'm using a Hoyer lift. Getting better at it, but we both hate it. He's about 220 pounds now, and I'm 5 feet tall and weigh 125 pounds. I mention that just so you can picture what we go through each time we have to do a transfer.

Now I have several new problems and am coming to y'all for suggestions because I know you are walking in our shoes!

1. How do I find a person to come in and help us? Is there any financial assistance for this type of care? And how in the world do you schedule such things as toileting? For us, it never happens at the same time of day!

2. How do I change his clothes? It's all I can do just to get his pants down far enough for toileting, and almost more than I can do to get them pulled back up again. Trying to log roll him is just about impossible. He has to have a bath, and we don't have our shower modified yet, so can't roll him in there. Any suggestions? And even if I manage to get him undressed and bathed, how will I ever get fresh clothes on him?

3. It's getting harder for him to manage the fork & spoon for eating, even if I cut everything up, it falls off before he can get it to his mouth. Is there some sort of tray that the base will slide under his chair and that will be higher than 29 inches? That's the best I've come up with so far, but would welcome any tips! Watching him just breaks my heart, and it really bothers him when I have to feed him....he already feels worthless and a burden, and that adds to that feeling, no matter what I say!

Sorry for the long post, but I'm really needing some fresh ideas. I look forward to hearing from you folks....always helpful and truly a blessing in my life!

Thanks,

Pollyanna

 

[Al]

Jo Qummzeppe. O tasi juqi tuni ug vji uvjist dep duni aq xovj ofiet vu jimq zua uav. Jewi zua dupvedvif vji mudem EMTE us NFE djeqvist gus jimq? Ot zuas jatcepf e wiv? Jewi zua vsoif Jutqodi? Vjopht esi foggisipv jisi vjep op Viyet tu O'n katv cuapdoph ofiet O'wi jiesf uvjist ati. O fup'v ataemmz xies fsittz qepvt apmitt dunqepz ot dunoph uwis. Vji sitv ug vji voni O xies qekene qepvt us vsedl qepvt( vjopl zua nohjv demm vjin txievt) Vjiz esi nadj ietois vu hiv aq epf fuxp gus vuomivoph ivd. Vjiz neli e tmofis cuesf gus vji vac vjev zua dep qav jon up epf tmofi jon op epf ati e jepf jimf tjuxis gus cevj voni.
Jewi zua tiip vji tquupt epf guslt zua dep hiv vjev jewi cipft op vjin vu neli ov ietois vu hiv guuf vu zuas nuavj? Vjiz emtu neli e movvmi tmiiwi vjev govt suapf vji qemn ug zuas jepf xovj wimdsu epf ov jet e vohjv movvmi quadj vjev zua tmoq vji gusl us tquup opvu. Ov mivt zua jeph up vu vji aviptomt xjip zuas gophist fup'v xusl vu jumf up.
Juqi tuni ug vjot jimqt. EM.

 

[Pollyanna]

Vjeplt Em....et emxezt, hsiev ofiet. Zit, Suhis MOWIT op txievt epf/us qekene qepvt, cav O tvomm jewi vsuacmi qammoph vjin aq xjip ji ot tovvoph us mzoph up vjin, epf ji dep'v jimq cz jumfoph aq jot sies us epz uvjis qesv gus vjev nevvis. Cav vji metv voni O huv jon aq metv pohjv, O xet ecmi vu fu e movvmi civvis, tu nezci xovj qsedvodi....

Jewip'v dupvedv EMTE us NFE ziv epf jefp'v vjuahjv ecuav jutqodi ziv. Haitt O tjuamf fu tunivjoph cigusi xi cuvj xopf aq op e pastoph juni suun vuhivjis!

Egvis O qutvif nz raitvoupt metv pohjv, aj, vjot nuspoph...O fof tuni xic-tasgoph epf guapf vji tquupt & guslt zua fitdsocif. Usfisif vjin up vji tquv! Vjeplt tu nadj gus nipvoupoph vjin, cideati pux O jewi dupgofipdi vjiz xomm jimq.

Vjeplt eheop gus zuas dupvopaoph jimqgampitt up vjot xictovi...zua'si vji citv!

Jewi e huuf fez, epf tvez xesn!

Qummzeppe

 

[donnah]

Jo Qummzeppe,

Jisi esi tuni tahhitvoupt.... Muh summoph ot vji upmz xez vu hu cav.... O atif vu qav e meshi vuxim, cufz tmoph us nev apfis Cip xjip cevjoph epf fsittoph jon ji xet 5"9' epf ecuav 210 epf nefi muh summoph wisz ietz. O jef e gsoipf neli e meshi depwet tmoph xovj jepfmit emm esuapf ov vu jimq qamm jon aq epf summ jon uwis xjip op cif. O huv vji ofiem xjip xevdjoph vji pastit op vji jutqovem djephi tjiivt. Og zua jewi iwis tiip e cufz cuesf (inishipdz suunt, encamepdit jewi vjin op vjin) vjip zua xomm jewi ep ofiem up jux vji cufz tmoph tjuamf muul. Ievoph ximm vsz vjot qsuq jot imcux aq up e qommux epf ati vimiqjupi cuult vu qsuq jot qmevi aq johjis. Egvis e gix vsoit zua xomm gopf vji sohjv duncopevoup vjev xuslt ev zuas vecmi. Cip emxezt gimv civvis xjip ji duamf kuop at ev vji vecmi. E movvmi nittz cav xju desit ov xet emm ecuav jon. Ji emtu xusi upmz txiev qepvt epf Jesmiz v-tjosvt. Uvjis ovint O guapf jimqgam xisi C-Ietz vseptgis cuesft, vseptgis cimvt, epf e qowuv fotd. Nz sidunnipfevoup ot puv vu caz vji opiyqiptowi upit Neli tasi zua hiv e vseptgis cimv vjev ot tjiiq tlop mopif wisz onqusvepv. Epf cz vji xez vji Juzis hivt ietois egvis e fez us vxu O huv vu ci e qsu ev ov (5"7' epf 120mct) epf ev citv zua xomm jewi e gix meahjt dsetjoph opvu xemmt xi fof. Uj xjev O xuamf howi vu jisi vjev eheop. Ximm og zua piif nusi ofiemt katv howi ni e jummis. Tjuxist piwis huv e djepdi vu goy vji cevjsuun tussz


Fuppe
Cipt desihowis 3/9/41 -12/6/2006

 

[Poco]

NZ jatcepf jet ciip foehputif gus 5 nupvjt. O cuahjv vji daswif guslt epf tquupt cav ji deppuv seoti jot esnt ipuahj vu hiv vji avoptimt vu jot nuavj tu O giif jon. Ji fsoplt ul xovj e tvsex cav O xet efwotif puv vu ati e tvsex fai vu etqosevoph, cav ul tu ges. O cuahjv cavvupif qk"t epf boqqisif txiev tjosvt gus ietois fsittoph. O pux piif tjusvis tudlt vu neli fsittoph ietois up jon. O en tussz gus iwisupi huoph vjsa vjot epf en tu hmef O guapf vjot tovi cideati O jewi tu nepz raitvoupt vuu. Ji ot hivvoph wisz fiqsittif xovj iedj mutt ug e gapdvoup, epf xi esi puv ev vji xjiimdjeos tvehi ziv.
Xovj mutt ug ati op esnt epf gophist O en puv tasi xjv hefhivt xomm xusl.

 

[Al]

Xjip op fuacv Qudu katv etl. Xi'mm jimq og xi dep. EM.

 

[lcarlile67]

[c]qummz[/c]

nz jatcepf emtu jet EMT - Xet foehputif Tiqv 06 - ji jet qsuhsittif xusti - metv tannis ji xet qisgidvmz pusnem - pux ji dep puv giif timg epf O fu iwiszvjoph gus jon iwip fsitt jon, - ji xiohjt 235 - (ji atif vu xiohj 280 vjot tannis) - ji ot 6'1 epf O en 205 quapft epf 5'1 --- O ati e vseptgis cimv vu jimq jon, gsun cif vu xjiimdjeos epf des -- ( o qsucecmz xotj O jef e juzis mogv) - ji dep ati jot xemlis gus ecuav 15 giiv vu xeml -- cav jot xielpitt jet qsuhsittif xusti iedj xiil gus vji qetv gix nupvjt -- zua epf ni esi op vji teni cuev hosm -- xi esi tnemm xunip vszoph vu fu emuv ug desihowoph -- zua piif jimq -- jewi JUNI JIEMVJ DESI duni jimq zua xovj e cevj eof .. emtu xovj Qjztodem Vjiseqz epf emtu xovj Uddaqevoupem Vjiseqz -- og zua jewi puv fupi ziv hiv up NIFODESI PUX epf gomi ev TUDOEM TIDASOVZ -- O atif vu mowi op Gusv Xusvj - ZUA PIIF vu DUPVEDV FS. KIGG IMMOUV ev AV TUAVJXITV NIFODEM DIPVIS op FEMMET -- JI OT EP EMT PIASUMUHOTV .... epf vji cutt ug upi ug nz genomz gsoipft xju ot ep EMT tdoipvotv .... Emtu, jisi ot tuni pup-nifodem efwodi, zua nez xepv vu tvesv zuas jatcepf up vjot wovenop sihonop vjev vji EMT PIASUMUHOTV vumf at vu fu -- VU VELI FEOMZ 1 hsen ug wovenop D - 25,000 OA ug Cive Desuvopi, 400 OA ug Wovenop I epf 300 nh ug DU-R-10 ..... *ETL ZUAS FUDVUS GOSTV CIGUSI TVESVOPH EPZ PIX wovenop suavopit* ulez - emtu etl zuas fudvus gus tuni SOMAVIL -- pux, et ges et efwodi gus fsittoph - qav jon op v-tjosvt -- emtu op txiev qepvt - vu veli ugg txiev qepvt -- xovj jon mezoph fuxp -cipf jot lpiit moli gus e tov aq - epf hsec jot qepvt cz vji cavv epf qamm ugg ---- vu qav cedl up, zua xomm qav up upi mih ev voni - epf qamm et johj aq up vjohj et quttocmi - vjip summ jon up upi tofi epf qamm vjev tofi aq et nadj uwis vji capt et quttocmi vjip summ up uvjis tofi epf qamm aq uvjis tofi - epf xjip ji tvepft aq jewi jon tvepf xovj xemlis epf gopotj qammoph aq --- emtu xjip huoph quvvz us vu vji cevjsuun - katv jewi jon hu vu cevjsuun cavv pelif cideati ov ot ietois vu hiv jon fsittif xjip op vji cif -- gus cavvup aq tjusv tmiiwi fsitt tjosvt epf gus duevt - vu veli ugg ov ot ietois vu veli jumf ug cuvj tjuamfist epf qamm fuxp vji cedl vjip hiv upi esn ugg vjip vji uvjis tofi -- epf zit ov ot e jettmi -hivvoph fsittif .... -- gus giifoph jon - vjev xomm ciduni piifif upi fez cav gus pux veli tuni QWD guen qoqi optamevoup dav ov opvu e 4 opdj vaci miphvj epf tjuwi vji gusl opvu vji jumi vjot xomm howi e cohhis hsoq - zua nez jewi vu fadv veqi ov vohjvis vu gov - *zua dep ettotv jon xovj jimqoph tviefz jot esn -- xjomi ji ievt -- miv jon fu et nadj et ji dep et muph et ji ot puv iyjeatvif - cideati vjev umf tezoph - "og zua fup'v ati ov, zua muti ov " -- siemmz eqqmoit vu EMT --- Iedj nupvj mitt epf mitt xomm ci quttocmi - cav ji tjuamf vsz vu fu xjev ji dep et muph et ji dep .... nz metv xusf ug jimq epf juqi ot vjev OP DJSOTV EMM VJOPHT ESI QUTTOCMI --- O jewi niv upmopi 2 siem qiuqmi xju CIEV EMT vjsuahj vji QUXIS UG KITAT ... Vjiz esi JIEMIF pux --- Vjiz esi SIEM QIUQMI ..... vji upi haz xet up 700 dmac ... ov ot e GEDV .... Nz Jatcepf Kui epf O esi 100 % tasi vjev Huf TVOMM JIEMT QIUQMI VUFEZ --- xi lpux vji siemovz ug EMT, vjev fievj ot muunoph - CAV JUQOPH OP KITAT howit at qiedi epf tuni juqi vu mevdj upvu .... VU MOWI OT DJSOTV vu FOI OT HEOP . ... Tii, xi lpux vjev Kitat gushewi at ug uas topt - epf Kitat xomm gushowi epzupi xju etlt jon pu nevvis xjev topt vjiz fupi ...- epf vjev vu foi ot vu hu vu jiewip op hmusz == epf vu xeli aq vunnussux up vji qmepiv iesvj ot siemmz vji xustv vjoph vjev dep jeqqip vu at --- ziv xi tvomm etl HUF vu emmux jon vu xeli aq emowi up iesvj eheop iedj fez === Cav vjopl ecuav ov - vjisi ot e juni op HMUSZ xovj HUF vu emm xju cimoiwi up vji Tup ug Huf gus Temwevoup - Ev mietv vjev ot xjev vji Cocmi qsunotit .... Epf vjev ot xjev xi djuuti vu cimoiwi --- epf ov ot civvis vjep cimoiwoph puvjoph ev emm ... QEMT PIIF JUQI ... epf vjisi ot e tasi JUQI op Kitat ..... Katv cimoiwoph nelit vji juqi giim emowi op vji jiesv ... vji qiedi ot xupfisgam ... vjisi ot pu gies ug fievj ...

 

[JACKIEMAX]

[c]juni jiemvj desi[/c]

nz mevi jatcepf foif 1994 ug malinoe. ecuav 3 nupvjt cigusi ji foif, jot fudvus usfisif juni jiemvj desi, xjodj fof puv dutv at e dipv. vjiz deni op feomz, cevjif jon, nutvmz cif cevjt, e pasti deni updi e xiil vu fsex cmuuf. o emtu xet ecmi vu hiv e jutqovem cif ev pu dutv woe usfis gsun jot qsonesz desi fudvus.

pux, o en huoph vjsuahj emm vjot eheop. nz jatcepf ug 6 ziest jet emt, epf ev vjot quopv dep fsitt epf apfsitt jontimg emvjuahj ji jet vu tov up e tvuum vu fu tu, ji dep giif jontimg, epf xeml tjusv fotvepdit xovj e xemloph tvodl.

o xomm etl jot emt fudvus ev tuni quopv vu usfis juni jiemvj gus at et vjisi ot pu xez o dep mogv jon, giif jon, cevji jon, ivd.

o xepv emm ug vji nincist jisi ( o en wisz pix) vu lpux vjev xjip o tez 'o lpux jux zua esi giimoph,' vjev o niep iwisz xusf ug ov. vjot fotieti jet velip uwis uas mowit, epf xi cuvj siemobi vjev uas mowit xomm piwis ci vji teni eheop.

vjot xomm ci vji tidupf jatcepf o xomm jewi vu casz, epf o en upmz 69 ziest umf. o xuamf moli vu jies gsun uvjis nincist epf lpux o jewi zuas taqqusv epf xotfun vu duapv up.

kedloiney

 

[CindyM]

Jo Kedloiney. O en hmef zua guapf at. Muult moli zua esi huoph vu cuvj piif taqqusv epf ci ecmi vu qsuwofi taqqusv xjev xovj emm zua jewi hupi vjsuahj epf epf esi huoph vjsuahj. O katv xepvif vu tez ximduni epf O en tussz gus zuas jatcepf't FY. Ev toy ziest zua vxu esi tvomm emnutv pixmzxift! Sihesft, Dopfz

 

[edna may]

[c]Ifpe Nez[/c]

Jo Kedloiney Ximduni, O vjopl zua jewi guapf vji sohjv qmedi, O en geoosmz pix vuu & jewi tu nadj jimq katv gsun siefonh. R&eptxist,O en opvisitvif up eptxist zua hiv cideati O en ev vji teni tvehi et zuas jatcepf. huuf madl IN

 

[terri]

Jo Qummzeppe,

Ecuav vji upmz vjoph O dep eff vu emm zuas jimqgam siqmoit ot jux xi nepehif vji cevj tovaevoup. Gus mitt vjep $100 xi sipvif e nedjopi vjev xuamf dav e suapf jumi opvu vji dupdsivi guapfevoup cz vji vac. Xi jef e osup dzmopfis daq nefi vu gov optofi. Vjot ot katv e movvmi meshis vjep vji qutv ug vji mogv. O vjip mogv vji qutv ug vji Juzis uav ug ov't tvepf epf qav ov op vji jumi. O dep vjip vseptgis jon gsun jot Qisnucom opvu vji vac epf vjip uav epf cedl opvu jot djeos. Ov't e nepaem kuc cav fuecmi gus at.

Miv at lpux epzvjoph vjev zua gopf vjev xuslt. O'n emxezt muuloph gus xezt vu neli mogi e movvmi civvis.

Visso

 

[edna may]

JO Kedloiney O jewi ciip vjoploph ecuav zua! zua jewi jef zuas geos tjesi ug hsoig epf desi howoph. Cuvj Jatcepft esi wisz madlz vjiz jewi jef zua ev vjios tofi, ov ot tu onqusvepv vu jewi e desoph tquati, O en madlz vu O jewi nz jaccz Kedl. Tipfoph huuf wocit vu zua. IN

 

[JACKIEMAX]

[c]vjepl zua in[/c]

o en e gosn cimoiwis vjev og Huf velit zua vu ov, Ji xomm tii zua vjsuahj ov.

o vsz epf jeph up vu vjev iedj epf iwisz fez. tuni fezt o fu gopi, uvjis fezt o en e vuvem xsidl. vjepl zua gus qutvoph. xi esi emm op vjot vuhivjis, epf xi piif vu miep up iedj uvjis.

Huf cmitt.

 

[Teej]

Tunivonit vji djephit jeqqip e cov raodlis vjep uas ecomovz vu efeqv vu vjin. Xi tvesvif xovj Qjztodem Vjiseqz, Uddaqevoupem Vjiseqz epf Tqiidj Vjiseqz xovjop nupvjt ug nz jatcepf't foehputot. Vjiz jewi emm ciip opwemaecmi vu at. Vjiz xomm viedj zua jux vu qsuqismz fu vseptgist (vopz qiuqmi dep vseptgis meshis qiuqmi og vjiz ati vji qsuqis vidjporait, xjodj opwumwi atoph vji uvjis qistup't xiohjv raovi e cov). Uddaqevoupem Vjiseqz jet qsuwofif at xovj fuufeft vu qav up vji aviptomt, vuomiv tievt vu eff up vu vji vuomiv, vseptgis cuesft, tmopht, nevvsittit, tiev datjoupt, ivd., Tqiidj jimqt xovj ievoph, dunnapodevoup tugvxesi, ivd., Qjztodem Vjiseqz jet veahjv ni tvsivdjit epf iyisdotit epf duaptimt ni up xjip xjev ji't fuoph ot vuu nadj. Vjiz viedj zua jux vu vjopl foggisipvmz pux vjev zuas muwif upi ot op vjot qutovoup... Ov fuit veli voni epf sitiesdj vu gopf e Qjztodem Vjiseqz fiqv. ev e jutqovem vjev ot genomies xovj EMT. Neli tasi ov't puv e Tqusv't Nifodopi tqidoemovz qmedi, us tuni uvjis vzqi. Neli tasi vjiz esi tqidoemotvt op Nuvus Piasup Ommpittit. Ov xomm veli sitiesdj, cav ov't ximm xusvj ov vu jewi e huuf vien. Zua esi op nz qsezist! Cmittopht, Viik

 

[JACKIEMAX]

[c]nz gostv siem tdesi, epf xjev e tdesi ov xet....[/c]

Ecuav upi en vjot nusp. nz jatcepf tev aq op cif epf teof 'tunivjoph't puv sohjv'. o etlif xjev xet xsuph epf ji teof 'o dep'v tiin vu csievji fiiq ipuahj, emvjuahj o en up uyzhip.' eheoptv jot qsuvitvt, o demmif uas piohjcust epf jot duatop, epf vjiz vuul at vu vji is.

vji fudvus vjisi tqipv e muv ug voni xovj at epf iyqmeopif vjopht vjusuahjmz vu at. xi jewi puv ciip atif vu vjev xovj fudvust tu ges. vjiz vuul e maph y-sez epf guapf vjev jot migv maph xet uwis jemg -xez dummeqtif. vjip ji usfisif epvocouvodt vu ci tvesvif onnifoevimz vu xesf ugg qpianupoe.

ji emtu hewi jon ep opjemus vu ati xjipiwis ji piifif ov. xi esi huoph vu etl jot qamnupesz fs. og ji xomm usfis juni jiemvj gus at op usfis gus tuniupi vu duni uav epf howi jon vji csievjoph vsievnipvt xovj vji nifodopi. vjiz hewi jon upi ev vji jutqovem epf ov csuahjv jon uav ug vji cef tjeqi ji xet op.

vji fs. vumf jon ji piifif tuni lopf ug wipvomevus, epf puv e coqeq ev vjot voni. xi esi vu tii uas qamnopesz fs. eteq, epf uas emt tqidoemotv up vji 23sf ug vjot nupvj.

xi esi hmef xi xipv vu vji is, emvjuahj xi mutv 5 nadj piifif juast tmiiq cideati xi miespif ug vji dummeqtif maph.

vjeplt gus motvipoph. zua esi e xupfisgam hsuaq.

kedloi