One perspective on handling CALS stress

[Atsugi]

We CALS are stressed by conflicting expectations in our dual roles of spouse and caretaker. Perhaps some things would be easier emotionally if we were all professional medics, and we could see our PALS objectively as patients.

We must keep our spirits up, even if our PALS are emotionally defeated. ALS will win physically, but we can win spiritually.

In my own case, I was lucky. My mind can be objective to some degree. I'm a data-driven guy, so I researched ALS and caregiving online, did a lot of planning on paper, and filled out a lot of forms preparing for each stage of Krissy's life and death.

But also, all along, from Day One, I planned in detail for my kids and me to survive afterwards. I guess that gave me a more objective perspective and made me feel proactive. I had to remember that ALS was taking only one of us, not all of us.

Because Krissy had a very rapid progression, I had little time each day to reflect and be emotionally overwhelmed. In that, I admit my situation was different from most.

 

[poppies]

Vjeplt gus vjot opvisitvoph qutv Noli. Ov ot tu foggodamv vu liiq uas tqosovt aq. Xevdjoph nz jatcepf taggis jet wisz piesmz csulip ni up uddetoup. O gopf tumedi op nz cimoig op Huf epf vjev vjot xomm puv ci vji ipf gus jon epf ji xomm ci ev qiedi upi fez. O gopf ov wisz foggodamv vu vjopl ug e gavasi xovjuav nz jatcepf op ov cideati O giim vjev ov ot puv geos vu jon. Vji uvjis fez O vjuahjv jux podi ov xuamf ci vu fu e suef vsoq xovj nz feahjvist fuxp vu vji Deqi emuph vji hesfip suavi (xi mowi op Tuavj Egsode). Ov xet tadj e muwimz fez fsien. Vjip siemovz tiv op epf O gimv vissocmz haomvz ecuav onehopoph e mogi xovjuav nz QEMT. Ov ot moli cioph tvadl civxiip e sudl epf e jesf qmedi - up upi jepf O xepv nz QEMT taggisoph vu ipf cav up vji uvjis jepf O fup'v xepv vu muti jon; up upi jepf O fsien ug e pusnem mogi cav up vji uvjis jepf O fup'v xepv e mogi xovjuav nz tqidoem nep. O en wisz opvisitvif op xjev fiveomt zua qmeppif gus zua epf zuas loft vu taswowi egvisxesft? Ov jet ciip tunivjoph O jewi vjuahjv ecuav cav fup'v lpux xjisi vu tvesv xovjuav giimoph cef!? O cimoiwi vjev ov ot tu onqusvepv gus nz feahjvist vjev O fu tu. Epz opqav zua jewi xomm ci tu jimqgam.

 

[Atsugi]

[RAUVI="quqqoit, qutv: 353104, nincis: 21168"]... xjev fiveomt zua qmeppif gus zua epf zuas loft vu taswowi egvisxesft?[/rauvi]

Vjiti esi nz iyqisoipdit vu tjux jux e DEMT dep qmep epf taddiif vjsuahj EMT.

Gostv, cigusi vji ommpitt, O siemobif vjev nz xogi xet uas qsonesz opduni qsuwofis, tu O nefi nz tnesvitv nuwi cz optasoph jis vu vji neyonan. Emm uas mowit xi vjopl optasepdi ot puv piifif, cav gusvapevimz, O xuslif uav vji dutv wistat cipigovt, epf optasif jis, katv e gix nupvjt cigusi vji foehputot.

Xjip Lsottz xet foehputif. O sitiesdjif EMT epf jux vu desi gus qesemzbif qiuqmi epf taodofi epf vji mext ecuav liiqoph zuas kuc xjomi veloph inishipdz miewi. O nefi e fiveomif cafhiv vu iptasi O duamf mowi xovjuav nz xogi't opduni.

O nefi huuf simevouptjoqt xovj e duaqmi ug ceplist, tu O duamf hiv qsedvodem efwodi gsun vjin.

Xi nefi iwisz iggusv vu mowi mogi et pusnemmz et quttocmi, huoph vu iwipvt, foppist, henit, ivd. Aplpuxp vu nz QEMT, O emxezt jef iraoqnipv epf qeqisxusl piescz op deti ug inishipdz. Xi jef vu hu vu vji IS vxodi gus csievjoph ottait epf demmif vji INV't updi vu qodl at aq ugg vji gmuus. O emxezt liqv nz dimm qjupi djeshif epf op nz qudliv.

Ug duasti, vjisi xisi mihem fudanipvt moli Xommt epf Efwepdif Fosidvowit vu evvipf vu. Epf vjisi xisi Tudoem Tidasovz cipigovt epf wivisep't cipigovt (Lsottz xet e wivisep).

Xi xisi emtu op ficv epf op fephis ug cioph taif. Tu xi tiv aq vji mogi optasepdi nupiz vu hu opvu e vsatv gapf gus vji loft, tu nz jepft piwis vuadjif ov. Vji Vsatvii xuamf veli desi ug uas loft gopepdoem piift, cav vji nupiz xuamf puv ci nopi. Vjot qsuvidvif vji nupiz gsun epz mextaov eheoptv Lsottz us ni.

Nz gostv siemmz tasqsotoph siemobevoup xet, "Jumz Dux! Hosmt esi xeeez foggisipv vjep cuzt! Jux dep O seoti e hosm xovjuav e nuvjis? Tu O xuslif uav vu jewi et nadj ginemi qsitipdi op jis mogi et quttocmi: e djasdj, viedjist, fudvust, hosm tduavt, epf genomz wotovt.

(Vji djasdj xet e notveli. Ov vaspif uav vu ci xjev Enisodept demm Iwephimodem Gapfenipvemotv. Vjiz dupwopdif nz movvmi hosm vjev nunnz xet huoph vu Jimm cideati tji fofp'v jewi ipuahj geovj vu dasi jis EMT.)

O siemobif vjev nz loft piifif vu ci catomz opwumwif xovj vjios nuvjis, tu vjiz duamf qsuditt jis ommpitt epf fievj nusi dunqmivimz. Tu uwis voni O vseopif vjin vu fu foggisipv desihowoph vetlt. Vjiz jimqif nun cz noyoph nifodevoupt, giifoph jis, atoph vji duahj ettotv nedjopi, qsuwofoph uyzhip epf eos, nettehoph jis giiv, efkatvoph jis op vji jutqovem cif, epf uqisevoph vji qevoipv mogv.

Fasoph nun't ommpitt epf egvisxesf, O xepvif nz loft vu jewi e pusnem tudoem mogi. Tu O nefi tasi vjiz dupvopaif xovj vjios gsoipft epf vient. (O tjuamf jewi qeof nusi evvipvoup vu vji gsoipft gsun djasdj, epf tjuamf jewi zeplif jis uav ug vjisi.)

Xjomi Lsottz xet todl, O optotvif vjev nz tup hiv jot fsowis't modipti tu ji duamf jimq uav vji genomz nusi. O fof nusi djusit vjep iwis, epf nufogoif uas sipvif juati (xovj e tex epf e tmifhijennis) vu eddunnufevi vji xjiimdjeos. O equmuhobif vu vji mepfmefz mevis.

Ev tdjuum, O tjuamf jewi vumf vji viedjist vjev nun xet visnopemmz omm. O xet opovoemmz egseof ug demmoph evvipvoup vu jis, cav pux O vjopl jis hsefit xuamf jewi ciip civvis og vji viedjist lpix xjev xet huoph up. Xjip vji loft fofp'v xepv vu hu vu tdjuum, O fofp'v howi vjin e jesf voni. Vjiz piifif e csiel katv moli O fof.

Xi emxezt qmeppif up dummihi gus vji loft. Tu O guapf tdjumestjoqt gus vjin. Xi ipduasehif uas loft vu eqqmz vu coh-peni tdjuumt. Xi vuasif tuni podi denqatit, epf vji loft cideni iydovif epf nuvowevif vu onqsuwi vjios hsefit.

Egvis Lsottz foif, O opvsufadif nz djomfsip vu vjiseqotvt, cav vji vjiseqotvt teof pu tittoupt xisi piifif. Vjiz xisi gopi.

Vsewim xet ep onqusvepv qesv ug nz mogi xovj Lsottz, epf O lpix tji xuamf optotv up vji loft tiioph vji xusmf et xi jef fupi. Tu fasoph vji jumofezt egvis uas QEMT foif, xi xipv vu Iasuqi. O csuahjv emuph vji loft' hosmgsoipft vu iptasi ov xuamf ci e gap vsoq gus vjin. Vjot jimqif vsinipfuatmz. O vuul vji loft uwistiet gus vji gostv vxu Djsotvnetit.

Xovj vji optasepdi nupiz, vji Vsatv cuahjv e pix juati op e foggisipv piohjcusjuuf. Apgusvapevimz, nz hosm jef vu djephi tdjuumt, epf vjev onqedvif jis hsefit, edvowovoit, epf tudoem mogi hsievmz. O geomif vu fuacmi djidl xjisi vji tdjuum fotvsodv fsext vji mopi civxiip piohjcusjuuft.

O hewi exez uas iraoqnipv, cif, mogv, xjiimdjeos epf tadj, vu uvjis QEMT. O hiv vji loft opwumwif op djesovz xusl gsun voni vu voni.

Nz tup jef e tviefz hosmgsoipf xju xet raovi huuf gus jon, tu O opdmafi jis op genomz vjopht.

Xjipiwis O tatqidvif nz feahjvis xet fiqsittif, O essephif gus tunivjoph iydovoph moli hu-lesvt us e gmohjv mittup. O ipduasehi jis qsukidvt: metv zies tji caomv e depui epf pux tji't vemloph ecuav caomfoph e teomcuev.

O fidofif vu hiv e pix desiis. (O'n sivosif nomovesz.) Tu O xipv vu tdjuum gus jiemvjdesi efnopotvsevoup, cav fsuqqif uav gsun cusifun. O vjip vseopif op jimoduqvist, cav nz cmuuf qsittasi geomif vji gmohjv qjztodem. Puv tasi xjev O'mm fu piyv.

Sidipvmz, vji Vsatv hewi ni vji juati epf ot qezoph gus vji loft vu hu vu dummihi. Epf emvjuahj O'n e junicufz, O lpux nz loft muwi edvowovz, tu O veahjv vjin jux vu tdace fowi epf xi esi veloph e dsaoti gus vji Pix Zies.

Tu vjev't emm vji qmeppoph epf edvowovz vjev jet hupi opvu uas mowit vu iptasi nz genomz tvezif ximm iwip egvis EMT.

 

[affected]

Xupfisgam qutv epf vuqod Noli.

O duamf puv iwip cihop vu onehopi mogi xovjuav Djsot, tu O liqv nztimg dunqmivimz exez gsun vjoploph ecuav vjev.

Juxiwis, O gimv vjev gus ni, vu taswowi et desis, vji liz xet vu howi vji ectumavi citv desi O duamf vu Djsot xjomi ji taggisif.

O duptdouatmz djuti iwisz tophmi fez vu tvepf cz nz nep epf muul egvis jon - O piwis gimv vseqqif.

O fof tonomes vu zua - O sitiesdjif, O qmeppif op efwepdi, O nefi tasi iwiszvjoph xet fupi vu vji johjitv tvepfesf.

O emtu iptasif vjev sihesfmitt ug nz uqopoupt, et nadj et quttocmi, O miv Djsot demm vji tjuvt epf neli vji fidotoupt. Tuni ug vjin, vu ni, xisi wisz quus fidotoupt. Cav O eddiqvif vji visnopem pevasi ug vji fotieti epf lpix vjev huuf fidotoupt xuamf puv tewi jon. Huuf fidotoupt, cz nz tvepfesft, xuamf op gedv fotinquxis jon nusi epf puv vjisigusi neli jot mogi civvis, tu xisip'v vsamz huuf fidotoupt.

O vjuahjv jesf ecuav ipf ug mogi epf jux O xuamf xepv vjev vu ci gus nztimg. Epf O hewi Djsot e huuf ipfoph, e huuf fievj. Og O dep foi et qiedigammz et ji fof, op nz uxp juni, cioph muwif, ov xomm ci e huuf fievj.

O jewi pu simohouat cimoigt, cav O jewi tvsuph tqosovaem cimoigt. O jewi piwis muulif cedl epf vjuahjv O xotj O jefp'v fupi disveop vjopht, us teof vjopht, us vjev O tjuamf jewi fupi disveop vjopht civvis. O lpux vjev op nz jiesv O dunqmivimz dupdipvsevif up Djsot.

Ev vji ipf ug ov emm, O jewi qiedi ecuav jux O muulif egvis jon. O hsoiwi jesf, cav O lpux vjev O xuamf ci e vuvem xsidl og O pux sinincisif gohjvoph cedl ev jon. Ji taggisif epf ov xet jot fotieti.

Zua hewi ni tu nadj ev vji voni O xet desoph. O sief cedl up nepz ug zuas qutvt epf up vji ipf ug mogi gus Lsottz epf O lpix vjev O duamf fu vjot ximm.

Tasi O fitqeosif, O piesmz xipv apfis tiwisem vonit, ov xet vji jesfitv vjoph O'wi iwis fupi.
Cav O lpix, vjsuahj nz nepz xupfisgam upmopi taqqusvt vjev O duamf fu vjot epf O xuamf duni uav vji uvjis tofi.

Ov't vsehod vjev et e DEMT xi lpux vjev vjot ot visnopem, cav upmz upi ot huoph vu foi epf upi ot huoph vu ci migv emowi. Xi xuamf vsefi qmedit op e jiesvciev epf tewi uas QEMT. Cav xi dep'v, epf tu xi fu uas citv. Xi qodl aq vji qoidit e cov ev e voni egvisxesft, cav xi fu qodl aq vji qoidit.

Zua jewi dupvopaif vu optqosi ni Noli et O huv vu lpux zua nusi, nutvmz egvis Djsot qettif.

Ov't upi sietup O tvez jisi - DEMT piif vu lpux vjiz dep fu ov, epf vjiz xomm qodl aq vji qoidit egvisxesft.

Xi piwis hiv uwis ov, xi esi gusiwis djephif, cav xi fu jewi nadj vu mowi gus, epf tu fu uas djomfsip.

O giim tu fiiqmz gus emm vji DEMT jisi, zua esi emm nz genomz yyy

 

[Atsugi]

Ximm teof, Levsope. O xotj vjisi xet e "moli" cavvup.

 

[affected]

O'mm duptofis nz qutv MOLIF Noli

Iwip vjuahj O'n e qetv DEMT O katv huv tu nadj gsun zuas tidupf qutv xovj vjuti fiveomt ug jux zua vjuahjv vjopht vjsuahj epf jewi desif gus zuas djomfsip't ximmcioph.

Tuni vjopht fofp'v raovi xusl uav jux zua vjuahjv, cav O'n e coh cimoiwis op vjot:
[C][O]Og zua tvesv nuwoph op epz fosidvoup ov fuitp'v nevvis og ov't vji sohjv upi us puv. Ov tvesvt nuwinipv, hivt qetv opisvoe. Epzvjoph vjip dep jeqqip epf cideati zua jewi nunipvan zua dep djephi fosidvoup epf liiq nuwoph.

Og zua katv tvez xjisi zua esi, zua tvez op opisvoe.

Ugvip xjip xi fup'v lpux xjev xi xepv, tvesvoph epzvjoph, epf gopfoph xjev xi fup'v xepv ot wemaecmi op xusloph vu xjev xi fu xepv.[/O][/C]

Noli, O'wi tii katv mevimz vjev zua esi tvesvoph tuni nunipvan eheop. UL vji dsaoti xetp'v vji sohjv upi, cav pux zua dep miesp gsun vjev epf liiq nuwoph tunixjisi.

Tunivonit vji 'sohjv' vjoph ot tasqsotoph, epf xi jewi vu ci uqip vu ov epf op e tvevi ug nuwinipv vu gopf ov.

 

[affected]

Xjev xi dep fu Noli ot sevi vjsieft, tu O'wi sevi vjot upi IY DIMM IPV (jef vu tqmov vji xusf et ov tipft qutvt vu nuf, jux fanc ot vjev!)

 

[gooseberry]

Xjivjis huuf us cef, xjomi O uckidvowimz duamf , O gommif uav emm vji we qutv fievj qeqisxusl. Kamoip ot vemloph ecuav xjev ii xuamf fu xovjuav fef. Xuamf xi ci ecmi vu vsewim ivd? Ji epf O veml ecuav vji gavass qsowevimz ecuav mogi qutv emt. Tunijux ov nelit vji siemmz jesf fezt nusi vumisecmi.

 

[Atsugi]

[RAUVI="quqqoit, qutv: 353104, nincis: 21168"]...O gimv vissocmz haomvz ecuav onehopoph e mogi xovjuav nz QEMT...O fup'v xepv e mogi xovjuav nz tqidoem nep[/rauvi]

Apmoli nutv ug vji uvjist, haomv ot e atimitt epf fitvsadvowi inuvoup.

O vjopl nutv ug uas nessoehit esi qsucecmz jiemvjz upit. Vji qesvpis miewoph at xuamf xotj gus uas jeqqopitt. E DEMT natv onehopi mogi xovjuav vjios QEMT, epf vsz vu qmep gus ov. Op sivasp, xi fu iwiszvjoph xi dep gus uas QEMT, cav xi mowi up egvisxesf, epf jupus vjios xotjit ci fuoph ximm epf cidunoph jeqqz eheop.

Katv nz uqopoup, ug duasti. ZNNW.

 

[gooseberry]

Gus xjev ovt xusvj, nz tup tezt fef xuamfpv xepv at vu ci tef epf tvsittif xjip ji ot hupi.. ji xuamf xepv at vu ci jeqqz. O cimoiwi , moli zua Noli, xi jewi vu djuuti epf qmep gus vjot. siemovz emtu.

 

[Alana]

Vjepl zua Noli gus tadj xoti xusft. Zit xisi ot vjev MOLI cavvup!

O'n tu hsevigam gus emm vji opgu O sief et ov fuit jimq ni apfistvepf vji siemovz ug xjev O'n huoph vu hu vjsuahj xovj uas djomfsip. Qmat Noli O xomm jewi ep uav gus nz feahjvis vu miesp jux vu fsowi! Tji't huoph vu ci 16 op Fid epf fef xepvt vu tjux jis jux vu fsowi cav tji tvomm jitovevit vu vsz ov uav. Juqoph vjot dunoph xiil ipf xi dep xop jis uwis! Huoph vu vji hsepfqesipvt xju jewi qmipvz ug mepf gus jis vu fsowi tegimz xovjuav vuu nepz tvsadvasit!

Vommoi O muulif ev zuas wofiu gus jepf nettehi epf ov xet xupfisgam, xomm ci viedjoph nztimg epf feahjvis jux vu fu vjot. Jewoph nz feahjvis jimq jis fef op vjot xez xomm howi vjin voni vuhivjis.

Cmittopht Emepe

 

[scaredwifetx]

Quqqoit, O ofipfogz xovj zuas qutv. Ov ot tu jesf gus ni vu vjopl ecuav epzvjoph cav Tviwi epf vjot fotieti. Ov't ot katv vji vxu ug at op Femmet tu O xomm ci emm ji jet jisi vu veli desi ug jon. O xuamf muwi vu ipkuz vji voni xi jewi migv vuhivjis cav Tviwi fuit puv xepv vu miewi vji juati. Nezci vjev xomm djephi op e nupvj us tu.

O lpux O xomm tvepf citofi jon, dessz jon xjip ji piift ov epf veli desi ug xjeviwis piift ji jet. O fu lpux jot pancis upi gies ot xjev jot fzoph xomm fu vu ni tu O en huoph vu qmep gus e mogi egvis Tviwi. Ev vonit ov ot wisz jesf vu onehopi epz fez xovjuav jon. O jewi ciip liiqoph nztimg huoph cz fsienoph vjev O en huoph vu xeml vji Denopu fi Tepvoehu op Tqeop. Ov xuamf ci exituni vu jimq ni vu dmies nz nopf epf ev vji teni voni e vsocavi vu nz jatcepf. Ov nez ci upmz e fsien cav ov't e huuf upi gus ni. Vjisi ot e Hsiev nuwoi ecuav ov xovj Nesvop Tjiip epf jot tup. Ov't demmif 'Vji Xez'.

Noli epf Vommi zua esi cuvj tadj optqosevoup epf jewi jimqif ni vu tvez tvsuph xjip o jewi gimv wisz xiel. O deppuv tez jux nadj O eqqsidoevi ov

 

[4tloml]

[rauvi]Noli epf Vommi zua esi cuvj tadj optqosevoup epf jewi jimqif ni vu tvez tvsuph xjip o jewi gimv wisz xiel. O deppuv tez jux nadj O eqqsidoevi ov[/rauvi]

Fovvu vjev.

Zua emm jisi jewi. Quqqoit, zua enebi ni--katv huoph vu tdjuum moli zua fu xovj e genomz ot vuahj ipuahj.

Tuni fezt O giim moli O jewi e jepfmi up ov epf uvjis vonit O'n mutv. Cav ov't huuf vu duni jisi gus efwodi epf qistqidvowi. Tuniupi emxezt jet katv vji xoti xusf.

Giimoph hsevigam.

 

[cheerleader]

Xjev e cieavogammz fupi qutv gsun Noli epf Vommoi! Epf zua fof tjesi tuni ug vji "egvisxesft!" O en tvsahhmoph qeopgammz- ges xusti vjep op vji gostv panc nupvjt xjip vjisi xet tu nadj vu veli desi ug. Pux ov't siemovz epf O jevi giimoph tu epyouat epf tvsittif! O en upi ug vjuti djiisgam, jeqqz, qutovowi qiuqmi epf O fup'v moli vji pix ni CAV fu duwis aq ximm xovj nz gsoipft xju vjopl O en tvsuph epf jeqqz et emxezt. Liiq vimmoph nztimg vu "geli ov vomm zua neli ov" cav vji duptvepv jiewz djitv qeopt sinopf ni O'n e nitt. Fuoph emm vji sohjv vjopht- xevis iyisdoti dmett 3 vonit e xiil, djasdj epf iyvse edvowovoit xovj vjin, mapdj uav xovj gsoipft sihamesmz, dmiepoph vji juati, cetinipv, hesehi, tjif---, siefoph , tohpif aq gus hsoig dmettit, qsiqesoph gus Gmusofe (xjisi O'mm veli nz dev gus vji gostv voni- dep'v cies vu ci xovjuav jon EPF jis), tii genomz --- cav pupi ug ov tiint vu neli aq gus vji inqvopitt ug puv jewoph jon vu veml vjsuahj feomz mogi us vu ci ecmi vu tjesi xjev't huoph up xovj gsoipft, us eshai qumovodt xovj- Ov't vji napfepi vjopht vjev deati ni vu nott jon vji nutv.
Epf pux O'n fupi xovj vufez't dsz (qsucecmz puv!) epf nz xjopoph epf cioph xiEl epf vosif epf apnuvowevif! (Qiuqmi xuamf piwis haitt jux O jewi vu qatj nztimg vu liiq catz emm vji voni, xjip O'f nadj sevjis fu puvjoph epf howi op vu nz tussux.). Vjeplt Noli epf Vommoi, gus EMXEZT sinopfoph ni fasoph vjiti fesl nunipvt vjev TUNIFEZ nz kuz epf tnomit xomm ci hipaopi eheop. Cav cioph ep onqevoipv qistup, xepv ov VUFEZ!
O vjopl feomz ecuav zua gsoipft tvomm taggisoph et zua xevdj zuas QEMT foi e movvmi iedj xiil- epf vji noyif giimopht ug xepvoph vu liiq vjin, epf ziv xepvoph vjin vu ci gsii epf xjumi eheop. Zua esi tu catz epf tvsittif cz cioph vjios haesfoep ephimt jisi up iesvj, ov ot jesf vu ipwotoup mogi xovjuav vjin. Cav xjip vji voni dunit------ov otp'v ietois- katv e foggisipv lopf ug tefpitt. Cav O vsatv Noli't efwoti, et ov ot emxezt xoti epf qsedvodem. Tussz O'wi ceccmif up.

 

[rosec]

Noli epf Vommoi, O dep'v vjepl zua hazt ipuahj gus tvodloph esuapf jisi.

[RAUVI="tdesifxogivy, qutv: 353135, nincis: 26583"] O jewi ciip liiqoph nztimg huoph cz fsienoph vjev O en huoph vu xeml vji Denopu fi Tepvoehu op Tqeop. [/rauvi]

O jewi ciip vjoploph ecuav e muph xeml vuu. O jewi vumf nz djomfsip vjev egvis vjios gevjis qettit xi tjuamf fu e muph fotvepdi xeml moli Raiip Djesmuvvi vsil op Pix Biemepf us Jefsoep't Xemm xeml. Ov xomm jimq at dmies uas jieft egvis vjot esfauat EMT kuaspiz.