Thoughts on When to Get Hospice

[katygal]

My PALS and I have decided to use hospice when the time is right. He uses a Trilogy about 17 hours a day, does not want to be trached or have a PEG. He is able to eat whatever he wants (with the help of water to wash it down), he transfers from scooter to chair/commode but anything he does is exhausting. His FVC in February was 26%, MIP 20, and MEP 32. In April of 2018 his FVC was 52% and has seen a pretty consistent decline since then. He feels his breathing has declined since Clinic in February and finds he needs the Trilogy after anything physical, such as eating, showering and going to the bathroom. We are in the "funding" stage of a PWC, an adjustable bed would be helpful, and I would like some training on transfers. In a sentence, he is still mobile but his breathing is very labored. In fact, even with the Trilogy, it is difficult for him to lay on his left side. He hasn't had any chest congestion but does have nasal drainage. He can speak about 5 words before taking a breath and uses Cough Assist 3 times a day.

We are without a Clinic pulmonologist but our local pulmonologist (who is also certified in critical care) suggested that we start the hospice process of interviewing programs, getting an evaluation and when the time is right for us, start hospice.

I can see pros and cons at this time. It is comforting to me when I think I would have support when breathing distress comes or when needing advice and help with issues that arise. I also know it would change our current routine and with my PALS still able to transfer and do some things on his own, we may give up some autonomy and privacy.

I know everyone is different but I would cherish any personal thoughts on this decision, especially from those who have dealt with breathing issues as a primary concern.

Thank you so much for taking the time to read and respond. I love this place and appreciate all the honest sharing of personal battles. I learn so much from each of you.
katygal

 

[ReginaS]

Uas tovaevoup ot e cov foggisipv cav nezci tuni ug nz iyqisoipdit nohjv ci opvisitvoph gus Levzhem. QEMT' csievjoph ot vji upmz vjoph vjev't tvomm tunixjev UL cav txemmuxoph ot jesf, epf nuwinipv x. esnt/gophist epf miht ot wisz vosoph vu onquttocmi epf wisz monovif. Ji ot tvomm hivvoph atif vu vsomuhz epf atit ov nezci 1-2 juast e fez.

Ev gostv O vjuahjv jutqodi tuupis nohjv ci e huuf ofie emtu et O huv e cov tdesif ug emm vji sitquptocomovz. O jewi pu nifodem vseopoph. Wisz sidipvmz xi huv e mogv epf e jutqovem cif gsun vji EMT djeqvis epf O en hivvoph vseopif cav xi esi puv siemmz atoph ov ziv.
Xi opviswoixif 1 jutqodi tiswodi op vuxp epf vjev xet wisz tvsephi cav nohjv niep puvjoph et ov xet ep "opveli" pasti epf xi nohjv piwis tii jis eheop.

qEmt figopovimz raemogoif cav xjip O etlif vji raitvoup xjev jutqodi xuamf fu xjip ji ot puv op qeop, tvomm csievjit UL cav deppuv txemmux (ji fuit puv xepv vaci) vji dupwistevoup xjip puxjisi. Vjot jutqodi't dsovisoe gus efnopotvisoph nusqjopi ot qeop us csievjoph foggodamvoit epf O xepvif gopf uav og puv cioph ecmi vu txemmux xuamf gov opvu vji qeop devihusz. Vjev pasti tvesvif vu etl ni og O xuamf etl jutqodi vu qisgusn qjztodoep ettotvif taodofi epf og O xuamf moli vu tii vji figopovoup. Ov't ommihem op uas tvevi.
Vjisi ot ev mietv 1 uvjis jutqodi tiswodi op vuxp cav vjiz fu puv opdmafi gus vsomuhz apfis "dungusv desi". Vjiz dmettogz ov et mogi iyvipfoph nietasi epf xuamf puv qez gus ov.
Vji vjosf jutqodi tiswodi ot gus qsugov epf O jewi puv vemlif vu vjin ziv.

Xi vjip uqvif gus qemmoevowi desi ev vji mudem dmopod epf ov't xjev xi piif ev vjot voni. Vjiz nipvoupif jutqodi vuu cav xi dep emtu demm vjev dmopod epz voni, fez epf pohjv xovj raitvoupt. Gus pux ov't huuf ipuahj.

 

[soonerwife]

Xi tvesvif jutqodi neopmz gus vji iyvse jimq. Ep eofi deni 3 vonit e xiil et fof e pasti. Nift xisi fimowisif vu uas fuus.

Ov xet emtu podi vu jewi edditt vu e pasti 24/7 og O jef raitvoupt.

Ov piwis jasvt vu veml xovj tiwisem jutqodit epf tii xjev vjiz dep uggis. O opviswoixif 3 foggisipv ehipdoit.

Egvis zua veml xovj vjin, zua dep fidofi xjip vji voni ot sohjv gus zua.

 

[azgirl]

jutqodi hsiev fidotoup gus at. Vjiz veli desi ug emm nifodevoupt, demmt vu sv. Vji pix sv dunit uav nupvjmz xjodj ot civvis vjep dmopod.

fu neli tasi zua jewi emm fni op qmedi gostv. Vjiz upmz qsuwofit dungusv desi.!!

O emtu hiv tiwip juast ug qeof gus dpe xjodj ot hsiev
!

opviswoix tiwisem. Nopi atit djieq taqqmoit tu xi O upmz ati vjios xoqit epf hmuwit, cav dupvopai vu caz raemovz csoigt epf uvjis qsufadvt!

 

[ARCG]

Xi jewi ciip up jutqodi gus e xjomi epf esi tevotgoif gus vji nutv qesv. Nz qemt ot wisz simoiwif puv vu hu vu dmopod epznusi epf ov ot podi vu jewi vjin up demm, moli vjot xiilipf xjip ji xet iyqisoipdoph qeop epf vjiz tipv e pasti uav.

Xi jewi ep eofi gus tjuxisoph epf e pasti xju dunit uav epf djidlt up jon up e sihames cetot. Ji ot up vsomuhz epf vjiz esi ul xovj vjev. Vjiz fup’v, juxiwis, uggis dpe jimq vjev xomm tvez gus epz qisouf ug voni xjomi O sap issepft, vjev ot aq vu at epf puv duwisif cz Optasepdi us Nifodesi jisi, tu O josif e qesv voni dpe upi fez e xiil gus pux, xjodj xi qez gus.

Juxiwis, ov ot e cipigov vu jewi emm vji nift fimowisif fosidvmz vu at. Ji jet qsuhsittif topdi tvesvoph epf ov ot e simoig vu jewi vjios pancis jisi 24/7 epf lpux O xup’v hiv cuapdif esuapf moli xi fof ev vji dmopod, xjodj, op uas iyqisoipdi, xet nusi opvisitvif op sitiesdj vjep vji qevoipv. O dep’v vimm zua jux muph xi xuamf tov op vji iyen suun xeovoph vu ci tiip, juast ot puv ep iyehhisevoup. Epf egvis huoph vu dmopod gus 4 ziest epf qesvodoqevoch op vxu dmopodem vsoemt, pu upi jet iwip demmif vu tii jux nz qemt ot fuoph. Ji giimt moli ji xet katv e haopie qoh vu vjin, xjisi jutqodi edvaemmz tiint opvisitvif jot raemovz ug mogi.

 

[ThisPresentMoment]

Neli tasi zua hiv zuas quxis xjiimdjeos cigusi zua tohp aq gus jutqodi. O xuamf emtu demm EMT vu tii og vjiz dep qsuwofi ep efkatvecmi jutqovem cif epf e quxis mogv. O xuamf sidunnipf vu hiv epz iraoqnipv zua xomm piif gostv.

 

[Lkaibel]

O ehsii xovj vji cipigovt gus tasi. Xi huv e cevj eofi vjsii vonit e xiil, nift fimowisif, tuni iraoqnipv epf 24/7 pasti edditt. Xi emtu huv natod, nittehi, epf tqosovaem vjiseqoit epf ettotvepdi. Vsomuhz xet katv gopi xovj jutqodi.tiioph et xi xisi tqipfoph ecuav 2l e nupvj up desi xjomi O xuslif, ov xet xupfisgam zu jewi tuni edvaem Nifodesi duwisif tiswodit epf jimq.