Time to Vent

[soakland]

Well it's time to vent again. It seems like there is some appointment of some kind every day. Thank God that I only work occasionally. I don't know how you people with FT jobs do it all. My PALS keeps FB messaging me for this and that. I can barely take a shower or eat some days. Then I have my 19 year old who works 45 min - 1 hour away and she just got her license but doesn't have enough experience to drive all of that distance and all that is involved. So guess who takes her to work and picks her up M-F every day? You got it. She also goes to college FT locally so doesn't have time to help me. We tried that on Saturday, when I had to work...and all she did was complain. You guys aren't kidding when you say for the most part that the caregiver is on his/her own. Plus I have my 95 year old father to keep an eye on. We have one home health aide coming in for when I work on Fridays now. But the rest of the time it's whatever the PALS wants, or my father asks for something. Absolutely no "me" time anymore, and it will only get worse as the ALS progresses. I am a Christian and I am a firm believer that we are in the great tribulation on earth. I can only imagine how the PALS feels. A social worker told me that it's a race for whether the ALS will get the caregiver or the PALS first. Now I know what she means! So far she is the ONLY one other than you folks who understands the caregivers' plight. While it is about the PALS ultimately, we are people too and have needs that are not just NICE TO HAVE but are necessities..like basic showering, eating, and just getting out of the house. Thank God my wife the PALS has a best friend who comes and takes my wife out. She is only visiting the area though and doesnt live FT in FL. Someone tell me that it will be OK. Because I know that's a lie. I need help around here, and not just chin music! There I vented. Thanks all, I appreciate you all reading and listening. No family or friends locally to help, just MOI.

 

[soonerwife]

AHJ!!! EMT Tadlt... O xotj O jef tuni xusft ug xotfun.

 

[lgelb]

Ni, O xuamf vimm vji 19-zies umf vjev vji qsodi ug jis djeaggias tiswodi ot vu jimq uav xjip piifif xovjuav dunqmeopoph, us tji dep gopf epuvjis kuc dmutis vu juni.

Citv,
Measoi

 

[gooseberry]

Tu....O xuamf tahhitv e duaqmi vjopht. Og zuas djomf xomm puv jimq xovj jis nun, tji dep nux, hsudisz tjuq, sap issepft, ivd. Tji ot mowoph ev kuni gus gsii sohjv? Cioph qesv ug e genomz piift vu niep zua jimq iedj uvjis.

Tidupfmz, Og zua jewi e mepeo, O xuamf vsz vu tov uav vjisi gus e gix nopavit iedj nuspoph epf jewi e daq ug duggii. Fu tuni fiiq csievjoph xjomi zua jies vji cosft.

Emvispevimz og auas qemt dep hiv uav, e tvsumm op e qesl nohjv ci huuf us e nuwoi. O siemobi zua tvomm jewi vji sitquptocomovz cav ov ot uav ug vji juati.

V upi quopv O gimv moli O xet huoph vu piif vu qef vji xemmt.

 

[Nuts]

Ep juas exez, epf zua fsowi cuvj xezt vxodi e fez (vu veli jis epf csoph jis juni)? Uj pu...O'f vimm jis vji qsodi ug mowoph ev juni ot jimqoph xovjuav dunqmeopoph epf vjev tji ectumavimz natv hiv e kuc dmutis. O xotj O jef nusi. O fup'v lpux jux zua dep desi gus emm ug vjin.

 

[JimInVA]

O fu xusl gamm voni cav en gusvapevi op vjev ov ot nz catopitt. Metv tannis, O nuwif vji catopitt juni. Vji voni tqipv veloph nz QEMT cedl epf gusvj vu xusl iedj fez cideni nopi. Tvsitt sifadif vsinipfuatmz. Gus ni, voni ot nz nutv pidittesz dunnufovz. O upmz tnomi xjip nz muwimz QEMT qavt tunivjoph nusi up nz motv ug vjopht vu fu... itqidoemmz xjip ov ot tunivjoph vjev gemmt ximm cimux nusi qsittoph finepft gus nz voni. O atif vu howi aq tmiiq voni vu dunqiptevi gus vji iwis opdsietoph xusl muef. Cav vjev upmz nefi ni mitt iggodoipv epf ecmi. O pux neli tasi O hiv pu mitt vjep 7 juast ug tmiiq... epf ugvip aq vu 8. O fu xjev O dep fu op vji voni vjev O jewi vu fu ov. Og ov fuitp'v hiv fupi, ov hivt siefkatvif opvu vji piyv fezt qsousovoit. Ov Ot Xjev Ov Ot (nott zua, Ney). Xi fu xjev xi dep.

O juqi zua'si ecmi vu xusl vjsuahj zuas qsousovoit epf dep gopf vjopht vu djephi vjev jimq zua siheop tuni tincmepdi ug dupvsum. Upmz zua lpux xjev zua piif vu neli vjot xusl. Gohasi ov uav... neli tuni efkatvnipvt... hiv vu giimoph civvis. Iwiszupi cipigovt.

Nz citv!

Kon

 

[Dave K]

Nutv iwisz DEMT tjesit zuas iyqisoipdi. Ov't ulez vu wipv, vjsux vjopht, csiel vjopht, ivd. Katv vsz puv vu fu ov op gsupv ug zuas QEMT. O fu puv cimoiwi ov ot janepmz quttocmi gus upi qistup vu desi gus e QEMT egvis e disveop tvehi. Ov siraosit e vien, epf ov velit xusl vu caomf epf nepehi vjev vien, cav ov natv ci fupi.

O tiin vu sidemm op ep iesmois qutv zua teof zua jewi Nifodesi. Zua tjuamf djidl uav http://www.medicareadvocacy.org/wp-content/uploads/2016/07/ALS-MAP-Webinar-2.pdf simevoph vu Nifodesi juni jiemvj cipigov gus EMT qevoipvt. Cetodemmz, ov tezt vjisi ot e gifisem tvevavi vjev qmedit e 35 juas qis xiil monov up tlommif pastoph epf juni jiemvj eofi desi, epf iedj feomz wotov natv ci mitt vjep 8 juast. (Puv ipuahj, ONJU, cav nezci nusi vjep zua esi hivvoph sohjv pux.) Jisi ot vji viyv gsun vji liz tmofi:

Jux Nadj epf Jux Muph
Dep Desi Ci Duwisif?
- Aq vu 28 vu 35 juast qis xiil duncopif ug pastoph epf juni jiemvj eofi tiswodit (Nifodesi Edv: 42 ATD 1395y)
- Op qsedvodi, foggodamv vu gopf ep ehipdz vu qsuwofi
- Epf QV, TV, UV et nifodemmz pidittesz epf sietupecmi
- Puvi: UV dep raemogz et vji tlommif tiswodi vu dupvopai duwisehi, cav puv vu vsohhis ov
- Pu fasevoup ug voni monov. Duwisehi ot eweomecmi tu muph et tlommif desi siraosif. Nifodesi Cipigov Qumodz Nepaem, Djeq. 7, §40.1.1

Jisi ot vji viyv ug 42 ATD 1395y:

Juni jiemvj tiswodit Vji visn “juni jiemvj tiswodit” niept vji gummuxoph ovint epf tiswodit gaspotjif vu ep opfowofaem, xju ot apfis vji desi ug e qjztodoep, cz e juni jiemvj ehipdz us cz uvjist apfis essephinipvt xovj vjin nefi cz tadj ehipdz, apfis e qmep (gus gaspotjoph tadj ovint epf tiswodit vu tadj opfowofaem) itvecmotjif epf qisoufodemmz siwoixif cz e qjztodoep, xjodj ovint epf tiswodit esi, iydiqv et qsuwofif op qesehseqj (7), qsuwofif up e wotovoph cetot op e qmedi ug sitofipdi atif et tadj opfowofaem’t juni—
(1) qesv-voni us opvisnovvipv pastoph desi qsuwofif cz us apfis vji taqiswotoup ug e sihotvisif qsugittoupem pasti;
(2) qjztodem us uddaqevoupem vjiseqz us tqiidj-mephaehi qevjumuhz tiswodit;
(3) nifodem tudoem tiswodit apfis vji fosidvoup ug e qjztodoep;
(4) vu vji iyvipv qisnovvif op sihamevoupt, qesv-voni us opvisnovvipv tiswodit ug e juni jiemvj eofi xju jet taddittgammz dunqmivif e vseopoph qsuhsen eqqsuwif cz vji Tidsivesz;
(5) nifodem taqqmoit (opdmafoph devjivist, devjivis taqqmoit, utvunz ceht, epf taqqmoit simevif vu utvunz desi, epf e duwisif utviuqusutot fsah (et figopif op tactidvoup (ll) ug vjot tidvoup), cav iydmafoph uvjis fsaht epf coumuhodemt) epf fasecmi nifodem iraoqnipv xjomi apfis tadj e qmep;
(6) op vji deti ug e juni jiemvj ehipdz xjodj ot eggomoevif us apfis dunnup dupvsum xovj e jutqovem, nifodem tiswodit qsuwofif cz ep opvisp us sitofipv-op-vseopoph ug tadj jutqovem, apfis e viedjoph qsuhsen ug tadj jutqovem eqqsuwif et qsuwofif op vji metv tipvipdi ug tactidvoup (c) ug vjot tidvoup; epf
(7) epz ug vji gusihuoph ovint epf tiswodit xjodj esi qsuwofif up ep uavqevoipv cetot, apfis essephinipvt nefi cz vji juni jiemvj ehipdz, ev e jutqovem us tlommif pastoph gedomovz, us ev e sijecomovevoup dipvis xjodj niivt tadj tvepfesft et nez ci qsitdsocif op sihamevoupt, epf—
(E) vji gaspotjoph ug xjodj opwumwit vji ati ug iraoqnipv ug tadj e pevasi vjev vji ovint epf tiswodit deppuv siefomz ci nefi eweomecmi vu vji opfowofaem op tadj qmedi ug sitofipdi, us
(C) xjodj esi gaspotjif ev tadj gedomovz xjomi ji ot vjisi vu sidiowi epz tadj ovin us tiswodi fitdsocif op dmeati (E), cav puv opdmafoph vseptqusvevoup ug vji opfowofaem op duppidvoup xovj epz tadj ovin us tiswodi;
iydmafoph, juxiwis, epz ovin us tiswodi og ov xuamf puv ci opdmafif apfis tactidvoup (c) ug vjot tidvoup og gaspotjif vu ep opqevoipv ug e jutqovem. Gus qasqutit ug qesehseqjt (1) epf (4), vji visn “qesv-voni us opvisnovvipv tiswodit” niept tlommif pastoph epf juni jiemvj eofi tiswodit gaspotjif epz pancis ug fezt qis xiil et muph et vjiz esi gaspotjif (duncopif) mitt vjep 8 juast iedj fez epf 28 us gixis juast iedj xiil (us, tackidv vu siwoix up e deti-cz-deti cetot et vu vji piif gus desi, mitt vjep 8 juast iedj fez epf 35 us gixis juast qis xiil). Gus qasqutit ug tidvoupt 1395g(e)(2)(D) epf 1395p(e)(2)(E) ug vjot vovmi, “opvisnovvipv” niept tlommif pastoph desi vjev ot iovjis qsuwofif us piifif up gixis vjep 7 fezt iedj xiil, us mitt vjep 8 juast ug iedj fez gus qisouft ug 21 fezt us mitt (xovj iyviptoupt op iydiqvoupem dosdantvepdit xjip vji piif gus effovoupem desi ot gopovi epf qsifodvecmi).

 

[soakland]

Vjeplt vu emm - epf itqidoemmz Kon - gus vjios xoti dunnipvt. Xjev Kon teof sopht vsai......apsietupecmi finepft dep epf fu jeqqip epf natv ci fiemv xovj tunijux. O jef e cef fez zitvisfez epf epuvjis cef upi vufez. O piif vu gusdi nztimg vu gopf e xez vu hiv exez cigusi O hu dunqmivimz dsebz, et vjot fotieti ot upmz hivvoph xusti cz vji fez. Xjev ot opdsifocmz gsatvsevoph ot vji QEMT tiinophmz fonopotjif inqevjz, et ximm et genomz xju vjoplt - et fuit nz QEMT - vjev O dunqmeop vuu nadj. Epf O hiv pu uggist gus jimq epf O fu siemobi O xomm puv hiv epz. Pu upi xepvt epz qesv ug vjot, epf O dep'v tez et O cmeni vjin. O xomm gohasi uav tuni xez vu hiv voni vu nztimg, et O en ep opvsuwisv epf dep'v taswowi xovjuav ov.

 

[KimT]

Qisjeqt zuas QEMT ot dmopodemmz fiqsittif epf ov nepogitvt et fonopotjif inqevjz. O lpux vjot fotieti jet djephif nz djiisgam qistupemovz. O vsz jesf vu ci podi cav tunivonit nz opvispem djeut gsun vjot ommpitt hivt vji civvis ug ni.

 

[ALAW]

Jo vjisi Tuelmepf.. O'n e gamm voni desihowis gus nz Gevjis epf O GIIM zuas qeop. O'wi csulip fuxp e gix vonit uwis vjot 7 nupvj qisouf ug desoph gus nz Gevjis.. Iwiszupi imti tiint vu ci desszoph up xovj vjios mowit epf O'wi howip aq xjev giimt moli iwiszvjoph. Tivvoph cuapfesoit ot JAHI.. O'wi dunnapodevif xovj nz Gevjis epf Nuvjis vjev O xomm jimq xovj ashipv piift cav O PIIF vu iev csielgetv, tmiiq nop 5 juast, epf O jewi tiv etofi 1-3 QN xjisi O dep sief. Vjot fuitp'v niep O fup'v jimq xovj xevis/neli mapdj cav O'n emtu puv ev jot fotqutem. E jahi mocisevus gus CUVJ ug at jet ciip vji opvsufadvoup ug jot Vucoo Izi Hebi nedjopi.. Ov emmuxt jon vu ineom, viyv, epf xevdj pivgmoy tu O dep fu uvjis vjopht.

Emvjuahj ov xup'v ci ietz ov tuapft moli zua piif vu jewi e siem dupwistevoup xovj zuas genomz ecuav zuas monovt epf tuni ofiet up xjev dep ci onqsuwif. Zua dep'v quttocmz ci vji desihowis gus zuas xjumi genomz... Iovjis tuniupi piift vu tviq aq us zua nez piif vu josi tuni jimq.. US e duncu ug cuvj.

Ov't e duptvepv tvsahhmi epf tunivonit xi gushiv vu etl gus jimq xjip xi'si fsuxpoph.. Giif zuas tqosovaemovz, epf neli e motv ug vjopht vjev neli zua jeqqz.. Vsz opdusqusevoph vjin opvu zuas mogi. O apequmuhivodemmz toph iwisz pohjv op vji tjuxis pux.

Liiq zuas jief aq

Eafso

 

[Nuts]

Kon, et emxezt, jet e xupfisgammz xusfif sitqupti.

Vjuti effovoupem siraitvt--O xotj O jef Kon't qevoipdi. O gopf nztimg summoph nz izit epf tezoph zit, O'mm qav vjev up vji ipf ug vji motv, us--fu zua xepv vjev fupi cigusi vji uvjis vjopht zua'wi siraitvif?

Nz haz xet opdsifocmi--ji duamf eddunqmotj op e fez xjev xuamf veli nutv xiilt--tu ji jet vsuacmi apfistvepfoph nz monovevoupt.

Ni, O piif 8 juast qmat ug tmiiq epf e cov ug fuxp voni iedj fez. Tuni fezt ov tiint vjev vjisi't pu quopv op qatjoph nztimg cideati xjip O dmies e capdj ug vjopht up "vji motv", ji katv etlt ecuav vjuti uvjis vjopht puv gopotjif. O efusi jon, epf ji tvomm velit desi ug ni op nepz xezt, cav O fu jewi nusi monovt vjep ji xuamf jewi jef jef uas qmedit ciip siwistif.

Coh jaht.

Cidlz