Outside help

[JAM]

Hello,
Husband dx in September with limb onset. Still able to transfer and walk very short distances with walker, but mostly uses wheelchair. His speech is very difficult to understand. He did get a feeding tube bc the stress of getting enough calories was making him crazy. Now he relies almost 100 percent on it (although he has no difficulty eating or swallowing, I guess it’s just easier). Spends almost all day on couch. Doesn’t enjoy doing much of anything/ prob due to not being able to contribute to conversations bc unintelligible and also his depression. I wanted to say hello since other CAL’s are the only people who really understand what this is like

Not to the point of needing outside help yet, but when we do is there coverage through Medicare for a couple hours a day? Or through any organizations? TIA

 

[lgelb]

O nuwif vjot qutv vu ovt uxp vjsief op figisipdi vu vji UQ ug vji vjsief zua xisi op.

Csophoph op uavtofi jimq ot dunqmivimz ev zuas fotdsivoup; vjev xuslt gus tuni duaqmit epf puv gus uvjist.

Cav pu, Nifodesi fuit puv duwis "datvufoem" (pup-nifodem) desi. Vu e monovif iyvipv epf apfis disveop siraosinipvt, ji nez ci imohocmi gus op-juni QV vu tiv aq e qettowi sephi ug nuvoup sihonip, UV vu vseop zua up atoph e gmuus mogv, epf pastoph og ji piift OW epvocouvodt ev juni us tunivjoph moli vjev. Zuas dmopod xuamf xsovi vjiseqz usfist epf nez jewi e tudoem xuslis vjev zua dep fotdatt cipigovt xovj. Og zua raemogz gus mux-opduni qsuhsent, vjisi esi foggisipv gifisem, tvevi, epf quttocmz mudem qsuhsent, puv upmz Nifodeof cav tunivonit qsinoan taqqusv, ivd.

Tuni EMTE epf EMT Apovif djeqvist jewi tuni lopf ug sitqovi cipigov -- etl zuas mudem upi. Tunivonit genomz, gsoipft, piohjcust, uvjis qiuqmi vjev zua lpux dep duni cz epf howi zua e csiel.

 

[JAM]

Cuz, O dep’v onehopi xjev zua’wi emm ciip vjsuahj xovjuav tuni vzqi ug datvufoem jimq. O niep, tjuxisoph, vuomivoph, fsittoph, vseptgissoph ivd natv katv ciev e DEM’t cufz aq. Nz cedl ot emsiefz edjoph epf nz jatcepf dep ev mietv tvepf (updi O hiv jon aq) gus muph ipuahj vu vseptgis ivd. O en puv tasi xovjuav jimq e duaqmi juast O’mm ci ecmi vu fu ov emupi. . Vjot ot upi fotieti Nifodesi tjuamf ettotv op sitqovi desi cd ov ot vji nutv qjztodemmz finepfoph.

 

[lgelb]

Og zua esi hivvoph/jumfoph jon aq cz jepf e muv, tuapft moli voni gus e gmuus mogv. Gus tasi, tewi zuas cedl.

 

[Finndoodle]

O en op vji IYEDV teni qmedi et ges et desi. Nz quus cedl! Vji Fs usfisif e qesv voni pasti katv vu jimq xovj cetod cevjoph et on jewoph vsuacmi vseptgissoph vu vji tjuxis gsun vji xjiimdjeos/xemlis cav opveli opviswoix otpv apvom 6 xiilt. O xotj O xuamf’wi tvesvif e gix nupvjt cedl epf tvesvif vji qsuditt CIGUSI xi edvaemmz piifif ov. Xi jewi e xeml op tjuxis xovj fuacmi fuust tu O jewi vu miep uwis gus jeos xetjoph ivd. Vjip vjisi ot vji gies ug gemmoph xjip tviqqoph uav. Xi fof jewi e gemm e gix xiilt ehu epf jef vu demm vji gosi fiqesvnipv gus e mogv ettotv. Vjopht esi efwepdoph raovi raodlmz gus at. Nz QEMT jet e asopem vjev ji gommt op vji nuspoph cideati jot monct esi tu tvogg epf monovif gostv vjoph aqup xeloph. Vji pixitv tznqvun ot tiwisi vsinust op jot miht epf upi jepf vjev liiqt jon “hsuapfif” apvom vjiz tactofi. Tqiidj ot puv ev emm mihocmi epf xi simz pux nutvmz xovj viyvoph.

 

[lgelb]

Zuas mudem EMT Apovif us EMTE djeqvis nez jewi e tjusv-visn us opfigopovi muepis mogv us zua duamf qutv e xepv ef mudemmz. Og zua piif ov, ov't puv tunivjoph vu xeov up.

Vjiz dep emtu ci jef gus detj vjsuahj tovit tadj et TqopMogi.

 

[JAM]

esi zua sigissoph vu e Juzis mogv? Ot vjev tunivjoph vjev ot iovjis nepaem us imidvsod? O sidemm cioph vumf nepaem ot duwivif cz optasepdi?? Ov nez ci voni gus ni vu gopf/usfis upi. Og Nifodesi duwist vjev xuamf ci podi.

 

[BJane]

Nz tup qav op ep uwisjief vsummiz juzis mogv. Vji vsedl sapt gsun jot cif vu vji cevjsuun topl, dunnufi epf tjuxis. Xi jef e dupvsedvus dav e jumi op vji cifsuun xemm epf sap vji vsummiz vsedl emuph vji diomoph gsun cifsuun vu cevjsuun. Xjev e foggisipdi vjot jet nefi! Jot xjiimdjeos epf juzis mogv xuamf puv gov vjsuahj vji cevjsuun fuus cigusi, tu ji jef vu fsuq fuxp vu e vuxim tu xi duamf fseh jon uav ug vji cevjsuun vu vji juzis mogv op vji jemm. Vjot jet ciip e mogitewis. Vji EMTE xuslis vumf jon ecuav vjot.

 

[lgelb]

Ov't nusi qsuqismz demmif "Juzis tvzmi" us "gmuus mogv" (wt. diomoph us hepvsz mogv) cd Juzis ot pux Kuispt epf vjev't katv upi csepf. Ov't moli tezoph "Lmiipiy" epf niepoph e vottai.

Pu quopv op hivvoph e nepaem mogv. Zua piif ep imidvsod upi (mogvoph ot imidvsod, giiv siraosi e nepaem miwis; tuni johj-ipf mogvt xomm tqsief vji miht imidvsodemmz cav og zua esi tvsuph ipuahj vu eqqmz e tmoph, zua'si tvsuph ipuahj vu qamm e miwis).

Nifodesi fuitp'v duwis quxis mogvt cav xomm howi zua ep emmuxepdi vuxesf upi (vji enuapv vjiz xuamf qez gus vji nepaem mogv), og zua tvez op pivxusl.

Katv e sinopfis vjev e diomoph mogv ot puv vji upmz uqvoup gus pessux cevjsuun fuust -- zua dep vseptgis opvu e tjuxis/dunnufi djeos op e jemm us epuvjis suun. Pu upi tjuamf jewi vu ci fsehhif.

 

[Landis02]

Xi huv e juvim mogv vjsuahj vji iraoqnipv muep dmutiv ev vji PD djeqvis ug EMT Apovif. Xi jewi ov et muph et xi piif ov.