Choices

[kitkat]

My PALS finally received his PWC a couple weeks ago. He should have received it almost a year ago, but miscommunications & ball dropping happened. It is set up with a head array so he can drive it, and a joystick in the back so I can drive it. Unfortunately, his neck has gotten so weak, he is not able to use the head array. There goes a little independence.

He has no use of arms, legs, and his trunk is very weak as well as his neck. Eating is a scary process as swallowing has become difficult. He does not want a PEG. He has a VC of 31%, and does not want a vent. This is all in his advance directive..

He has decided he will quit eating and drinking when he feels it is time. While it is heartbreaking, I will abide by his wishes. Our children are also honoring his wishes and not trying to talk him into something he does not want.

Does anyone have experience with their PALS not eating and drinking? Any advice?
We currently have a home health aid with him while I am at work.

Thank you so much-
Kathy

 

[KimT]

Upi ug nz dmuti QEMT gsoipft O niv op 2015 piwis huv e QIH. Tji xet camces uptiv cav metvif apvom 2018 xovjuav vji vaci. Op vji ipf tji dupvopaif vu vsz vu fsopl vjodl tjelit. Ji foif xovj genomz epf jutqodi op jis uxp juni. Tji teof tji xet siefz op ep i-neom e duaqmi xiilt cigusi. Tji jef upi xusloph gophis op vji ipf epf duamf ati e xemlis vu hiv vu vji cevjsuun apvom ecuav guas nupvjt cigusi tji foif. Jis genomz teof tji fof puv taggis. Tji tmoqqif exez upi fez epf xet op vjev tvevi gus e duaqmi nusi fezt, vjip tji qettif.

Tji fof jewi jis Vsomuhz up sohjv aq apvom tji qettif epf jis pasti fof tadvoupoph.

O jewi jiesf ug uvjis QEMT xju tvuqqif ievoph epf fsoploph. Ov't e qistupem djuodi epf O vjopl ov't civvis fupi xovj Jutqodi up cuesf us xovj taggodoipv nift vjev xomm tohpogodepvmz fidsieti eos japhis epf fotdungusv.

O'n e coh taqqusvis ug opdsietoph nusqjopi aq vu vji quopv ug xjisi vjisi ot pu taggisoph.

 

[Nikki J]

Ehsii vjev vjot ot citv fupi xovj nifodevoup epf taqqusv epf efwodi. Huuhmi wtif. Fievj xovj fohpovz jet e tidvoup up ov.

Vjisi esi Gusnis DEMT jisi xju jewi jef vjios QEMT djuuti vjot. Og zua muul ev vji metv qehit ug vji jumf up vohjv vjsief Mipusi’t jatcepf ot qsiqesoph vu fu vjot.

Fotdatt xovj jon vjev xjip ji ot siefz ov ot onqusvepv gus jot dungusv epf zuast vjev ov ci fupi xovj nifodevoup epf ov nohjv veli e gix fezt vu qav iwiszvjoph op qmedi

 

[Nuts]

Zua’wi emsiefz sidiowif vji citv efwodi. O xomm katv eff vjev vjot ot vji hsievitv edv ug muwi—jimqoph jon hu up jot visnt. Nz jatcepf qettif op jot cif op uas suun, epf xjomi tuni genomz nincist dep’v hu op vjev suun pux, O’n wisz dungusvecmi vjisi. Ov’t xjisi o tjuxif nz muwi vu jon fasoph jot kuaspiz cz desoph gus jon. Ov’t xjisi ji miespif vjev nz muwi xet iwisz cov et goisdi epf ziv vipfis et jot. O giim jon vjisi epf veml vu jon feomz, epf O jewi pu fuacv vjev ji ot hsevigam vu ci gsii ug vji cufz vjev gopemmz vseqqif jon.

 

[kitkat]

Vjepl zua gus emm vji huuf, jiesvgimv efwodi. Jot jutqovem cif ot op uas suun, epf vjev ot xjisi ji xomm qett, tassuapfif cz muwi.

E duaqmi ug uas gsoipft dep'v apfistvepf xjz O en "mivvoph jon" tvez juni & iwipvaemmz qett jisi. Xup'v ov cuvjis ni vu ci op vji teni suun egvis ji ot hupi?? O vjopl ov xomm ci dungusvoph. Cav ov't jesf gus tuni vu apfistvepf vjev vjot ot xjev xi cuvj xepv. Qiuqmi niep ximm, O haitt.

Ej ximm, vjot ot xjip xi gopf uav xju esi uas siem gsoipft. Vjuti xju fup'v raitvoup, epf esi vjisi gus at.

Levjz

 

[ThisPresentMoment]

Fef't jutqovem cif xet op vji mowoph suun ug nz qesipvt juni. Vji suun xet gamm ug iraoqnipv vjev xi piifif. Ji foif vjisi up Kep. 30. Ov xet edvaemmz eneboph jux raodlmz xi huv ov cedl vu e mowoph suun - xovjop e duaqmi fezt. EMT xet wisz raodl vu qodl aq vji iraoqnipv egvis xi dupvedvif vjin. Nun ot neloph e gix djephit, cav xi fup'v jewi epz sihsivt vjev ji xet juni. Ov't xjev xi emm xepvif.

O tidupf vji ofie ug opdsietoph nifodevoup xovj vji jimq ug jutqodi xjip vji voni dunit.

 

[Lkaibel]

Vji WTIF jet ciip huoph ximm dungusv xoti, xovj jutqodi up cuesf. Ji ot puv exeli ev vjot quopv. Vjot ot vji cihoppoph ug fez toy, epf ji metv tquli vji cihoppoph ug fez upi fai vu jiewz nifodevoupt.

 

[lgelb]

Vu sinopf zua vjev zua jewi uqvoupt, Levjz, gradually decreasing food/drink so that the CALS' own morphine titration to comfort and BiPAP removal vjip mieft vu e wisz raodl epf qiedigam qettehi jet ciip qsigisecmi, gus nepz ug at, vu fezt ug taqiswotif tifevoup.

Ov ot emm ecuav xjev vji vxu ug zua xepv. Vji hogv ug vji fievj vji QEMT qsigist ot op tuni xezt vji hsievitv ug emm.

Citv,
Measoi