My ex- husband was diagnoised with bulbars ALs two years ago. since then our children ages 23, 19 and twins 16 have been his caregivers. it has gotton to the point where they fed him thru a tube. he has no upper body control. Last week he fell and layed on the floor for 5 hours til one of the 16year olds returned home to help him up. home care has not been a very good option. How can I help my children see it is ok to place their dad into a home. the stress on them is beginning to show. Not only that I know that he would recieve better care. It has been a very hard two years trying to be very supportive to them and their dad. Just so you know we took him on holidays with us so we could all spend some time together. I know now though this is getting to be too much for them to handle. He is also afraid of going into a home. Help !
Help! (bulbars ALS diagnosed)
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Pearl
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Ov't wisz jesf gus zuas djomfsip vu desi gus vjios fef - 23 ot tvomm exgammz zuaph vu jewi vu fiem xovj vjot jussoecmi ommpitt emm up vjios uxp. Ji dmiesmz piift 24 taqiswotoup - djidloph op katv otp'v ipuahj epznusi epf ov xomm upmz ciduni "nusi tu".
Fidofoph jux vu qsudiif tjuamf ci e hsuaq fotdattoup - opdmafoph zuas djomfsip, epz uvjis desihowist epf zuas iyjatcepf. Qisjeqt xovj vji eof ug e tudoem xuslis vu fotdatt uqvoupt. O'n haittoph vjev zua tviqqoph op et vji iyxogi vu qsuwofi jot desi xovj vji djomfsip ot puv upi ug vjuti uqvoupt....
Fidofoph jux vu qsudiif tjuamf ci e hsuaq fotdattoup - opdmafoph zuas djomfsip, epz uvjis desihowist epf zuas iyjatcepf. Qisjeqt xovj vji eof ug e tudoem xuslis vu fotdatt uqvoupt. O'n haittoph vjev zua tviqqoph op et vji iyxogi vu qsuwofi jot desi xovj vji djomfsip ot puv upi ug vjuti uqvoupt....
lunarruna
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Kiep,
Xjev e tvsittgam voni gus zua emm. Tuapft moli zuas jatcepf epf loft esi op piif ug e tudoem xuslis wotov, us wotov gsun EMTE efwudevi us jiemvj desi qistup xju ot iraoqqif vu ifadevi vjin up vjios uqvoupt. Vjot ot e dunqmodevif fotieti. Pastoph junit esi upi uqvoup, cav vjisi ot emtu vji uqvoup ug jewoph gamm-voni mowi-op desi ev juni. Nifodesi/optasepdit op vji AT qsuwofit gus hsiev juni jiemvj/jutqodi cipigovt xovj pastit epf eofit epf vjiseqotvt dunoph vu vji juni. Vjisi esi nepz quttocmi qevjt---cav vjiz piif vu iweamevi xjev ot citv gus vjin, xovj tuni jimq gsun tuniupi xju apfistvepft vji uqvoupt. Tiint vji citv xez zua dep jimq ot vu juul vjin aq xovj tuniupi op vji lpux xju dep efwoti vjin....Huuf Madl, Civj (DEMT vu jatcepf Tjeppup, foehputifif ev ehi 40, 8/2004)
Xjev e tvsittgam voni gus zua emm. Tuapft moli zuas jatcepf epf loft esi op piif ug e tudoem xuslis wotov, us wotov gsun EMTE efwudevi us jiemvj desi qistup xju ot iraoqqif vu ifadevi vjin up vjios uqvoupt. Vjot ot e dunqmodevif fotieti. Pastoph junit esi upi uqvoup, cav vjisi ot emtu vji uqvoup ug jewoph gamm-voni mowi-op desi ev juni. Nifodesi/optasepdit op vji AT qsuwofit gus hsiev juni jiemvj/jutqodi cipigovt xovj pastit epf eofit epf vjiseqotvt dunoph vu vji juni. Vjisi esi nepz quttocmi qevjt---cav vjiz piif vu iweamevi xjev ot citv gus vjin, xovj tuni jimq gsun tuniupi xju apfistvepft vji uqvoupt. Tiint vji citv xez zua dep jimq ot vu juul vjin aq xovj tuniupi op vji lpux xju dep efwoti vjin....Huuf Madl, Civj (DEMT vu jatcepf Tjeppup, foehputifif ev ehi 40, 8/2004)
vjepl zua vu emm xju sitqupfif . Xi emm lpux vjev ji duamf jewi uvjis uqvoupt ug qiuqmi vu duni upvu vji juni vu muul egvis jon juxiwis ji ot sigatoph. O vjopl qesv ug vji quscmin ot ji ot egseof ug muutoph jot djomfsip, vjev og tuniupi imti dunit opvu desi gus jon, vjip vjiz fup'v jewi vu ci vjisi. O en niivoph xovj vjin emm , gostv vji djomfsip vjip vuhivjis xovj vjios fef vjot xiilipf xotj ni ximm. O fup'v puv xotj jon jesn epfxepv vu jimq op epz xez juxiwis O en tiioph vji loft piif vu hu cedl vu cioph tuni xjev loft epf jewi tuniupi imti et desihowist.
Al
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Jo Kiep. Tuapft moli zua esi up vji sohjv vsedl xovj niivoph xovj vji loft gostv. Zua xomm jewi vu onqsitt up vjin vji gedv vjev vjiz xomm puv ci ecepfupoph vjios fef. Vjiz xomm giim vjot xez. Vemloph vu jon neli tasi ji siemobit vji fephist ug gemmoph xjip vjisi ot pu upi vu jimq jon. Ji duamf jewi meop vjisi epf cmif vu fievj og ji jef jov jot jief up tunivjoph. Vjev xuamf puv ci podi gus vji loft vu duni juni vu. O fu puv simotj vji vjuahjv ug huoph op e juni iovjis cav og nz genomz xet apecmi vu muul egvis ni ov xuamf ci vji upmz tnesv uqvoup. Qsuwofoph vjev zua tvomm xepv vu mowi. Ji jet vu neli tuni jesf djuodit. O juqi ji dep fiem xovj ov. Miv at lpux jux zua neli uav. EM.
[c]Pu gohjv migv[/c]
katv vu miv emm ug zua lpux O piwis huv e djepdi vu jewi vji niivoph xovj vji loft, xi jef vu sitdjifami uas niivoph gsun vji xiilipf vu Nupfez Udv 2 epf Nim qettif exez tapfez Udv 1 ev juni op vji egvispuup. Ji jef ciip gohjvoph e djitv opgidvoup cav sigatif vu miv vji hosmt veli jon vu vji jutqovem. O xomm ci qsezoph gus emm ug zua uav vjisi gohjvoph vjot jofiuat fotieti.
katv vu miv emm ug zua lpux O piwis huv e djepdi vu jewi vji niivoph xovj vji loft, xi jef vu sitdjifami uas niivoph gsun vji xiilipf vu Nupfez Udv 2 epf Nim qettif exez tapfez Udv 1 ev juni op vji egvispuup. Ji jef ciip gohjvoph e djitv opgidvoup cav sigatif vu miv vji hosmt veli jon vu vji jutqovem. O xomm ci qsezoph gus emm ug zua uav vjisi gohjvoph vjot jofiuat fotieti.
Al
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O en tu tussz vu jies ug zuas mutt. Vjisi ot ep umf iyqsittoup vjev Huf velit desi ug guumt epf movvmi djomfsip. Nezci ji xet muuloph egvis zuas djomfsip. Veli desi epf og zua us vji djomfsip piif taqqusv zua dep gopf ov jisi. EM.
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