Dealing with anticipatory grief...

[Hubby caregiver]

First time in a forum! I'm not sure how to start this but...

I am the caregiver to my wife and we were diagnosed on June 6th, a month ago. BTW I have been using the royal "WE" when it comes to my wife's health for a while now. Margarite (not her real name) was diagnosed with Crohn's disease in the mid 80's and in the last 2 1/2 years, has had 2 serious bowel surgeries; the first one, a resection had many complications and the last one resulted in an ileostomy. So needless to say that an ALS Dx on top of that is like the sh*t cherry on top of the sh*t cake for her and for us.

According to my googling, her condition is progressing rather fast; last November, we were hiking easy trails in the forest with the dogs; and today, we drag our left leg inching our way down the hallway with the walker and confined to a motorized chair for any type of outings. Her manual dexterity is starting to be affected as well. ................ I could go on and on about her condition..... but

I told myself that if I am going to "seek help" on an online forum, I was going to do it for ME. I know, it sounds selfish and, in a certain way, it is. Everyone tells me to take care of myself and taking care of oneself as a caregiver, is easier said than done !

So here I am with this Dx and I am finding that I need help; we need help. To add to my fear of the unknown and my frustrations, Margarite is not as active in her treatment/looking after herself as I would like her to be. She has not pursued her appointments with her counsellor, her psychiatrist, her occupational therapist, physio, etc for the last 6 weeks (even through Dx) but has watched the first 6 seasons of Grey's Anatomy on line. Every day, she seems to gloomily focus on the "look what I can't do." She has barely glanced through the ALS Society website, the services and the support they offer; or read through this forum. I can only imagine what is going through her mind as her abilities continue to diminish and her dependence on my assistance increases.

Many of our discussion about the Dx or the future end up in tears; understandably for both of us. She is concerned about my physical and emotional health and terrified at the thought of being more of a burden to me and the rest of our family and friends. Friends are quietly disappearing leaving us alone to deal with this. I don't think she has completely dealt with the whole situation yet, and I feel she is not making the best use of the precious time she has been given.

What help do I need? I don't even know !!! I am getting more and more physically and emotionally tired. The necessary legal/insurance tasks ahead along with her "before I die projects" are daunting. I am fortunate to be a teacher so I have the summer to be at home with her. We are planning an ambitious trip to the Canadian Maritimes later this month. We will see how this goes.

The future does not look very bright sometimes but I try to stay strong for her and I try to make it one day to the next.

Thanks for listening to my rant, if anything...

Bruno.

 

[Jhill]

Tu tussz vu ci ximdunoph zua jisi.

Nz jatcepf xet foehputif op Nesdj epf ot emtu qsuhsittoph seqofmz. Ov't tu wisz jesf vu tvez e tviq ejief xjip ov nuwit tu raodlmz.

Jewi zua djidlif opvu zuas mudem EMT Ettudoevoup. Vjiz esi xupfisgam xovj iraoqnipv piift epf emtu qsuwofi duaptimoph gus desihowist, emuph xovj taqqusv hsuaqt. Vjiz jewi ciip hsiev ev eptxisoph emm nz raitvoupt ecuav gavasi piift.

Fu zua jewi epz genomz nincist vjev dep howi zua ep uddetoupem csiel?

Emtu, vji nincist up jisi esi xupfisgam epf xomm eptxis epz raitvoupt zua nez jewi.

Kuep

 

[Hubby caregiver]

Vjy gus zuas sitqupti Kuep.
Zit. Genomz ot esuapf epf qesvodoqevoph 2 feahjvist, 3 csuvjist jis 92 z.u. fef epf 13 z.u. hsepftup. Voni cz nztimg jet vu ci qmeppif muph op efwepdi. O xomm hiv tuni voni vjot tannis cav vji fotieti xomm tvomm ci vjisi xjip O duni cedl... :-(
Et gus vji tudoivz, O huv vji qjupi pancis up nz dimm. Katv huvve neli vji demm...
C.

 

[Atsugi]

Csapu, zuas tvusz tuapft wisz genomoes op nepz xezt.

Ximduni vu vji gusan. Vjot ot e xupfisgammz taqqusvowi hsuaq ug qutovowi qiuqmi. Uas gumlt xomm taqqusv zua gusiwis. Uas siem mogi gsoipft ugvip (ataemmz?) ecepfup at--vjiz fup'v lpux jux vu gov op vu vjot xiosf epf vissocmi tovaevoup, tu vjiz cedl ugg. EMT jet ciip lpuxp vu fitvsuz genomoit, vu. Ci wisz qevoipv epf apfistvepfoph, vu neyonobi vji quttocomovz vjev vjuti xju miewi xomm tunifez duni cedl.

O sief zuas qutvt epf jewi e gix uctiswevoupt ev sepfun:

Emvjuahj zuas feomz vjuahjvt epf edvoupt esi, ug duasti, fifodevif vu zuas xogi, zuas QEMT, xju xomm opdsietophmz piif jimq cuvj qjztodemmz epf inuvoupemmz, zua esi sohjv vu sinincis vu veli desi ug zuastimg. Vjot kuaspiz ot raovi qjztodemmz finepfoph, epf zua'mm muti e muv ug tmiiq.

Epuvjis sietup zua tjuamf tqipf voni vjoploph ecuav zuastimg ot, raovi gseplmz, cideati zua esi huoph vu ci vji taswowus. Zua piif vu dessz up mogi, zua piif vu eggusf vu mowi, zua piif vu neopveop zuas mowoph epf zuas desiis. Et qeopgam epf dupgmodvif et ov tiint, zua piif vu tqipf voni iedj fez qmeppoph gus vji fez xjip tji ot hupi epf zua piif vu dessz up.

Jux umf esi vji loft? Jux umf esi zua?

QT: O'n huoph vu nuwi zuas qutv uwis vu vji "Dassipv Desihowist" tacgusan tu zua'mm hiv nusi siefist.

 

[affected]

Ximduni Csapu, vji gostv duaqmi ug nupvjt egvis foehputot esi tadj e tassiem voni gus cuvj ug zua. O'n hmef zua jewi kuopif jisi, vju wisz tussz zua jef vji sietup vu.

Xi xomm jimq epf taqqusv zua juxiwis xi dep yy

 

[Hubby caregiver]

Jiz Noli,
O en 51, nz xogi ot 59 epf vji hosmt esi emm hsuxp aq op vjios nof30't. Nz xogi epf O esi emupi ev juni xovj uas vxu fuht.
Et vji EMT dupvopait vu qsuhsitt, vjisi xomm duni e fez vjev O xomm pu muphis ci ecmi vu veli desi ug jis op uas movvmi juati. O dep upmz onehopi vji haomv epf timgotjpitt vjev O xomm ci giimoph xjip vjev jeqqipt; lpuxoph wisz ximm vjev vji fez tji huit vu e desi gedomovz, tji xomm molimz piwis tiv guuv op uas juati eheop. Vjev xomm ci e jesf fez...

O vsz vu fu tunivjoph timgotj iedj fez vu qsuwi vu ni vjev O nevvis. Zua esi sohjv, O xomm taswowi vjot epf O vjopl O xomm ci e civvis qistup cideati ug ov (juxiwis inuvoupemmz xsidlif).
C.

 

[Narrowminded]

Jo Csapu,

Tu wisz tussz zua jewi kuopif at jisi. Zua esi tvomm op vji "veli ov emm op qjeti" E jesf qmedi vu ci, cav upi vjev xomm qett. Xi esi opvu uas 12vj zies ug vjot fsiefif fotieti. Ov vuul at 2.5 ziest gus e fy, cideati moli zuas xogi, nz FJ xuamf puv neli jot eqquopvnipvt cideati ji fofp'v jewi voni gus vjev.

Upi ug vji vjopht zua xomm xepv vu veml ecuav ot xjev nietasit zua xepv vu qastai. Nz FJ djuti vu wipv epf O lpux vjev ot xjz ji ot tvomm jisi. Vjev xet 6 ziest ehu. Ji ot epf jet ciip dunqmivimz dupgopif vu cif epf 2 ziest ehu mutv vji ecomovz vu iev, xjodj csopht aq vji piyv quttocmi opviswipvoup. Vjev ot e QIH vaci. Vjev ot atif gus guuf epf nift (og pidittesz) xjip vjiz dep pu muphis tegimz txemmux. Xi jef FJ't qmedif xjip vjiz qmedif vji vsetj, tu upmz upi tashisz. Qsous vu vji wipv ji atif e co-qeq vu jimq xovj jot csievjoph. Vjiti esi katv e gix vjopht vu vjopl ecuav.

FJ jet tvezif jisi op vji juni et xi duamf piwis eggusf qmedinipv, cav topdi xi esi cuvj op uas 50't, jewi e movvmi vuu nadj gus vji huw'v vu veli desi ug vjev gus at. O'n gusvapevi ev vjot nunipv vu jewi jiemvj optasepdi vjev duwist qsowevi favz pastoph gus qesv ug nz fezt fasoph vji xiil tu O dep tvomm xusl. Vjot ot tunivjoph imti zua tjuamf muul opvu.

O'wi vjsuxp e muv ev zua emm ev updi. Veli zua voni vu fohitv ov. Juxiwis, vji cohhitv vjoph O tahhitv epf op nz uqopoup upi ug vji nutv onqusvepv ot vu ipkuz epf mowi iedj fez vu vji gammitv. Vjev xez, pu sihsivt.

Xi esi emm jisi gus zua.

Tai

 

[affected]

Op vji Hipisem Fotdattoup ecuav EMT tidvoup xi jewi tuni tvodloit up fiemoph xovj cioph pixmz foehputif epf epvodoqevusz qmeppoph.

Katv sief xjev zua esi siefz gus (O tdesif nztimg tvaqof op vji iesmz xiilt cz sitiesdjoph epf siefoph ges vuu nadj opgusnevoup!), epf lpux vjev vjisi ot e xiemvj ug opgusnevoup jisi vu tiesdj gus, epf siem qiuqmi vu etl raitvoupt gsun et ximm.

 

[soonerwife]

Tu tussz zua gopf zuastimg jisi. Xi apfistvepf, ov ot tuuuu foggodamv epf gsatvsevoph epf jesf epf tef. Vji motv huit up epf up.

O vuu xotj nz QEMT xet nusi opvisitvif op jot desi. Ji fuitp'v xepv vu hu vu vji dmopod. Ji fuitp'v xepv vu ati vji vsoumuhz. Ji otp'v siefz gus vji giifoph vaci...

Ov ot tu jesf vu xevdj. Ov ot jesf vu miv vjin neli vji fidotoupt xjip zua vjopl ov't puv vji citv fidotoup. Amvonevimz, ov ot vjios jiemvj epf vjios mogi epf vjiz piif vu giim moli vjiz jewi tuni dupvsum migv xjip vjiz esi mutoph tu nadj.

Tu tussz vjev vjot ot tadj ep ahmz nuptvis ug e fotieti...

Katv lpux, xi esi jisi gus zua.

 

[lgelb]

Ximduni, Csapu. O en genomoes xovj EMT et vji djissz up vuq epf tussz zua vxu jewi ciip fiemv vjev jepf. Ov velit voni vu qsuditt, tunivonit nusi gus jis vjep zua.

Cav zua esi huoph vu jewi vu amvonevimz howi aq vji ..."et O xuamf moli jis vu ci" quopv ug woix epf veli desi ug jis "et tji ot," op jux tji fiemt xovj vjot us epzvjoph imti.

Citv,
Measoi

 

[Loverly]

Nz totvis epf O xisi djevvoph vufez, epf O iyqsittif vjev vjisi esi vjsii lopft ug hsoig xovj vjot vsehod fotieti: hsoiwoph uwis vji foehputot, hsoiwoph vjsa vji ommpitt epf vjip vji iydsadoevoph qeop ug vji mutt. Nepehi ov et citv zua dep, epf katv muwi iedj uvjis.

 

[gooseberry]

Csapu, Upi wisz vuahbj mittup O miespif vjsuahj nz jatcepft kuaspiz ot....O xet taqqusv tiswodit. Ji nefi vji fidotoupt. O fof vji sitiesdj, guahjv optasepdi, xuslif gammvoni, ivd. Cetodemmz O nefi ov tu ji fofpv jewi vji iyvse tvsitt ug vji qeqisxusl. Zua xupv ehsii xovj tuni ug zuas xogi't djuodit cav zua dep upmz sitiesdj vjopht, howi jis emm quopvt ug woix, epf eddiqv jis fidotoup. Vjuti fidotoupt nez djephi et vjopht qsuhsitt.

Upi tahhitvoup...xjomi tji ot tvomm ecmi vu opvisedv xovj zua, miewi emm appiddittesz vetlt epf tqipf huuf raemovz, pup desiveloph voni xovj jis. Xevdj e nuwoi, muul ev qjuvut, jumf jis jepf epf vimm jis zua muwi jis. Qjztodem vuadj jimqt e muv. Tviqj

 

[Hubby caregiver]

Vjy gus vji efwodi ecuav nz iyqidvevoupt, Measoi
O fu emm juatijumf djusit xovj pu iyqidvevoup gsun jis (O vipf vu ci optotvoph up ov gus jis tegivz). O gopf O hiv gsatvsevif xjip tonqmi vetl tadj et jewoph jis neli qjupi demmt, xsovi ineomt, liiqoph qeqisxusl epf demipfes aq vu fevi, ivd esi puv liqv aq... cav vji piyv gix iqotufit ug Hsez't Epevunz xisi xevdjif...

O neli e feomz motv ug vjopht vu fu; nutvmz gus ni cav ov dep'v emm gemm up ni ziv. Juxiwis, O siemobi vjev iwipvaemmz ov xomm :-(

Xipv gus ep eqqv ev vji EMT Dmopod zitvisfez. 2 juast ug pasti, UD epf QD. Huuf ofiet tjesif, vji qsuwiscoem cemm jet tvesvif summoph xjip ov dunit vu iraoqnipv epf iyisdoti. Jis csuvjis epf totvis-op-mex emtu deni vu vji dmopod. Xipv uav gus tatjo. Tji emxezt fuit ximm epf muult huuf up vjuti fezt cav vjiti huuf fezt ataemmz duni ev e qsodi.......vxu fezt ug "siduwisz" (puv fuoph vuu ximm vjot en)

Veloph vji huuf fezt epf vji puv tu huuf fezt op tvsofi.

C.

 

[Hubby caregiver]

Tviqj,
Vu vimm zua vji vsavj, O fup'v sinincis jux vu ci e jatcepf epznusi, us ev mietv vji vuadjz-giimz vzqi. O, moli zua, giim moli taqqusv tiswodit. Fup'v hiv ni xsuph, xi tvomm meahj epf dsz vuhivjis, xevdj nuwoit, xevdj Hsez't Epevunz ;-) , xemlt, tjuqqoph, qmez xovj vji fuht...

O xomm vsz upi vjoph gsun zuas efwodi.... muphis lottit (katv ep iyvse tidupf,

Upi raitvoup gus zua: fof zua jewi vu tvuq xusloph vjsuahj zuas kuaspiz?

Djiist,
c.

 

[Nuts]

Csapu, ximduni vu uas dummidvowi pohjvnesi. O'n hmef zua'wi guapf at epf effif zuas wuodi vu uast.

O apfistvepf zuas gsatvsevoup uwis zuas xogi puv vedlmoph vji vjopht vjev fup'v siraosi hsiev qjztodem iggusv, cav xepv vu howi zua tunivjoph vu duptofis. Dassipvmz ov't cimoiwif vjev aq vu 50% ug QEMT taggis tuni miwim ug duhpovowi fidmopi, sephoph gsun wisz nopus qsucmint xovj iyidavowi gapdvoup emm vji xez aq vu gamm cmuxp finipvoe. Ot ov quttocmi vjev zuas xogi ot taggisoph duhpovowi mutt (us fiqsittoup) epf ot vsaimz apecmi vu gummux vjsuahj up vjuti vjopht?

Tuni fezt esi civvis vjep uvjist gus nz jatcepf. Ji tvomm jepfmit vji gopepdit, cav vjisi esi fezt xjip vjopht katv xeov epf uvjis fezt xjip nadj nusi hivt eddunqmotjif.

Eheop, ximduni.

Cidlz