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JimInVA

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Joined
May 29, 2014
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1,014
Reason
Lost a loved one
Diagnosis
04/2014
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VA
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Poquoson
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Our journey began at a Joe Bonamassa concert in November of 2012. With no advance warning, Darcey was suddenly having difficulty walking. Later that same night, she'd be unable to rise from a seated position. It was the beginning of a life phase that neither of us anticipated.


For all of 2013, and leading into 2014, we put life on hold and chased a diagnosis that didn't echo the symptoms that Darcey was experiencing. In the spring of 2014, Johns Hopkins welcomed us into their fold. Concurrent with that, Darcey's recoverable CIDP diagnosis was morphed into one of terminal ALS.


Fast forward to March of 2015 and Darcey was given notice that she was likely within 6 months of her life's end. I remember her smiling at the doctor and saying, "Thanks for that heads up... but I've still got things that need doing and simply don't have time for things like dying."


So much has happened in the intervening years. We battled cancer in my girl puppy (Elsie) and rejoiced in her survival/recovery... only to lose her later to congestive heart failure. Elsie was a "Daddy's girl" and was to be my much needed companion upon Darcey's eventual passing. It was extremely difficult to have to make the decision to put Elsie down.


We dealt with Darcey's perpetual and steady decline in function... and I was always the Champion... remarkably able to find new ways to compensate for that which would be forever lost. We took pleasure in watching our son (Jim) find success in Brooklyn, NY while we held firm to our home roots in VA. Neither of us anticipated our other child (Connie) moving from a handful of miles away to thousands of miles away.


Darcey had always been vocal about how determined she was to stick around, provided her "quality of life" (QOL) was good. For a good many years, now, it has been my greatest achievement to make each next morning worth waking up to for Darcey. And I have taken great pride in my success.


Much of Darcey's day to day centers around her ability to use the computer and to engage in social networking. She has successfully used voice dictation software to control and interface with the computer... long after she lost ability to use keyboard or mouse. Of late, however, ALS has finally reached its touch to include that safe haven above her shoulders.



Swallowing has become difficult and her voice weakens with each passing day. Recognizing that she might soon be unable to continue her daily use of the computer via voice dictation, we sought other avenues. And we were fortunate to have been granted the use of a computer with eyegaze technology so as to continue beyond the loss of her voice.


On this last Thursday, the eyegaze computer was delivered and some basic training was enjoined. On Friday, Darcey attempted to acquaint herself with it even more. But it wasn't yet set up with her email, so she pushed it away and showed signs of depression.


Saturday, I spent time getting the new computer set with her Exchange Mail and able to log into Facebook. We'd get past those two primary needs before moving onto Netflix and Amazon Prime. So on Sunday evening, I suggested we spend some time on the new computer.


About every 15 minutes, I'd go in to check on her. She was writing our daughter an email. I could see that it was going slow... but at least she was moving forward with it. About an hour an a half later, I noticed that she was no longer working with it. Instead, she was just staring at a blank screen. She asked me to take it away. She then asked me to take of her mask.


Darcey has needed the Trilogy to breathe full-time for several years. The longest she tends to be able to go without her mask is two or three minutes. So when she asked me to take off her mask, I told her I couldn't do that. She began a litany of repeated, "take off my mask... take off my mask... take off my mask". I told her I couldn't do that. She asked why. I told her that it just didn't feel right to do so.


Darcey did not talk much the remainder of the night. When she did talk, it was to ask that I take off her mask. On this one particular night, I was glad to be going to bed and, at least momentarily, ending what for me seemed a nightmare.


Monday started with Darcey seeming to be in better spirits. Surprisingly, she didn't want to use either computer. She also did not eat anything for breakfast... for lunch... or for dinner. Today, Tuesday, she repeated that same thing... not eating throughout the day (though she did spend some amount of time on the original computer). Tonight I asked, "is it your plan to stop eating?" She replied, "I don't know yet."


Darcey had always said that when she could no longer communicate... or when she could no longer use the computer and interface with her friends... or no longer be able to chew, taste and swallow food... she'd be ready to call it quits. It appears that she thinks that she's now there.


I'm probably having more difficulty with this than she is. I feel as if I've begun to fail at making tomorrow another day worth waking up to. On some level, I've always known that such a day would come... but I wasn't ready to concede that we were anywhere close to that day... at least not yet.


And so, for the moment, I wait minute by minute to see where the next moment takes us. Even with this, there are still things to feel excitement for. We've had a new baby puppy born to us last Wednesday. Her name is Elise and she is a black & white Coton de Tulear (same breed as was Elsie). Elise won't be ready to come home to us until sometime in April. I remain hopeful that Darcey will want to be around to welcome Elise into her new forever home. Time will tell.


In any case, I felt the need to share the shifting sands that are upon us. I've encouraged Darcey to participate with some of the fine folks I've met within the walls of these forums. If you are one of those folks, please consider keeping my thoughts private. This has been my "haven and safe place". I would appreciate your consideration. Who knows. This may all be just "one of those moments" and we'll quickly return to our previous "normalcy".


As always, My best goes with each of you...


Jim
 
Nz jiesv huit uav vu zua. Xi esi emtu op vseptovoup, vjuahj vji fiveomt esi foggisipv. Katv vufez, cuvj ug at jewi vumf Fef vjev't ov't UL vu hu og vjev't xjev ji xepvt. Nz citv emtu huit xovj zua.
 
Kon - Op iesmz Fid, zua xisi upi ug vji gostv qiuqmi vu jimq ni et O fiemv xovj nz jatcepf’t fy. Zuas xusft xisi lopf epf demnoph. Zuas tvusz xet jimqgam epf optqosoph. Vjepl zua.

O huv vji tipti vjev 1 ug zuas haofoph qsopdoqmit ot vu gummux jis mief xjodj sohjv pux, tiint moli e foggodamv upi. O emtu gimv vjev zua jewi e tumof guapfevoup ug geovj op upi epuvjis xjodj howit zua cuvj tvsiphvj.

Tjogvoph tepft ot e huuf xez vu fitdsoci jux zua natv giim et vjev guapfevoup ot nuwoph sohjv pux. O juqi ov’t e vinqusesz tjogv et zuas xogi efkatvt vu e foggodamv pix pusnem.

O juqi zua dep gopf tuni tumof guuvoph epf demn tuup. Ov’t jesf vu ci vjisi gus jis xjip zua giim aptviefz. Jeph up epf op vjisi. Qmieti miv at lpux jux ov’t huoph.
 
Kon, tipfoph zua cuvj muwi epf jaht.
 
Kon,
Zuas Fesdiz ot upi madlz mefz vu jewi zua. Zuas tvusz csopht ni cedl epf O dep tu giim zuas qeop. Katv tu zua lpux nz csuvjis updi xipv 11 fezt xovjuav guuf (pu vaci) epf sineslecmz cuapdif cedl (et nadj et zua dep xovj EMT) gus e cov. Ov fuit tuapf moli zuas Fesdiz nez ci hivvoph vosif ug vji gohjv epf jupitvmz xju duamf cmeni jis.
Zua esi puv geomoph Fesdiz ev epzvjoph. O'n tasi og zua etlif jis tji xuamf xjumi jiesvifmz ehsii. Liiq sinopfoph jis ug vji cieavogam pix qaqqz Imoti dunoph op Eqsom. Tjux jis qodvasit og zua dep. Liiq fuoph xjev zua jewi ciip fuoph Kon et ov tuapft moli zua'wi ciip fuoph iwiszvjoph sohjv.
Tipfoph zua cuvj e jah. Zua xomm cuvj ci op nz vjuahjvt. Kmzpp
 
Kon - jahi, jahi jaht dunoph zuas xez. O xomm tez vjev miespoph vji izihebi velit qsedvodi, tjusv opviswem vzqi qsedvodi. O xuamf ipduasehi jis vu howi e hu e movvmi ev e voni. Ev gostv Csoep xuamfp’v fu ov iovjis, vjip ji xsuvi muph ineomt atoph ov.

Ov nezci vinqusesz xovj Fesdz et tji miespt vu eddiqv vjot pix djephi epf puv ep ietz upi iovjis.

Katv lpux zua esi fuoph iwiszvjoph epf emxezt jewi. Zua esi ep exituni desihowis.

Jaht
 
Uj Kon.

Xi dep piwis siemmz iyqmeop vu epzupi imti xjev ov edvaemmz giimt moli vu hu xovj vji xotjit ug vji upi xi muwi. O veml ecuav vjot jisi e muv, cav apvom zua esi op vji tovaevoup, vji fiqvj ug xjev ov giimt moli dep'v ci gevjunif.

O lpux vjev zua xomm fu xjeviwis Fesdz xotjit, xjeviwis vjuti djuodit vasp uav vu ci, epf zua lpux O'n vjisi ev zuas cedl nevi. yyyy
 
Uj Kon
Tipfoph zua epf Fesdiz emm vji huuf wocit vjisi dep ci. Zua muwi jis tu nadj epf tji muwit epf vsatvt zua tu nadj ucwouatmz tu fiiq fuxp xjip zua gummux zuas jiesv zua fu vji sohjv vjoph
 
Vjepl zua tu nadj gus vji vjuahjv uav aqfevi. Zua'si nz qistupem jisu. O giim gus zuas movvmi mefz jovvoph tadj e suahj qevdj, vji mutt ug ietz dunnapodevoup xuamf neli ni gsiel. Xivjis tji qsedvodit epf hivt atif vu vji izihebi us tji fidofit vjev tji nohjv muh ugg cigusi jis RUM fivisousevit, tji'mm fu vji sohjv vjoph gus jis epf O juqi tji'mm veli zuas giimopht opvu duptofisevoup op vji xez tji huit ecuav ov.
Coh gev jah dunoph op! Tvez tvsuph.
 
Tu vupohjv O etlif Fesdiz og O duamf goy jis tunivjoph gus foppis. Tji siqmoif, "Pu... O'n ulez." Tu O etlif jis og tji xuamf qsigis vjev O puv etl apvom tji xet siefz vu cihop ievoph eheop. Tji vjip miv ni lpux vjev tji xet "fupi" epf jef pu opvipvoup ug iwis ievoph eheop. O uggisif vu demm op jutqodi tu tji duamf veli ugg jis netl epf puv jewi vu xussz ecuav "eos japhis". Tji teof vjev tji fofp'v xepv jutqodi... epf vjev tji juqif vjev tji'f ci hupi... us pies hupi... op ecuav e nupvj.



Tji xipv up vu tez vjev jis fidotoup xet cideati O fofp'v jewi vji voni vu veli vu tov fuxp xovj jis epf vu jimq xovj vji pix izihebi dunqavis. Xux... O fup'v lpux xjip O'wi iwis jef nz miht txiqv uav gsun apfis ni raovi moli vjev sinesl fof. O vjuahjv ecuav figipfoph nz dassipv medl ug voni... cav tuni qesv ug ni cimoiwit vjev tji piift ep iydati vu taqqusv jis fidotoup. Epf og vjev ot tu, vji metv vjoph O'f xepv vu fu ot vu veli vjev exez gsun jis. Ov tvomm jasvt moli jimm, vjuahj.


Civxiip at, O jewi ciip catz. O tvomm sap nz uxp dunqepz. Tuni voni ehu, O nuwif vji catopitt juni epf en pux vji upmz inqmuzii... cav vjev katv niept O pu upi imti vu tjesi xusl muef xovj. Emvjuahj O'n puv veloph up pix dmoipvt, nz iyotvoph dmoipv ceti muwit ni epf liiqt ni raovi catz. O tunijux EMXEZT nepehi vu hiv vji dmoipv xusl fupi. Cav O'n vxu nupvjt cijopf up opwuodoph... epf o tonqmz dep'v miv ov hiv epz gasvjis cijopf. Nz dmoipvt, xjomi eqqsidoevoph xjev O fu gus vjin (epf fu op e nutv vonimz neppis), esi puv eqv vu neli qeznipv apvom vjiz'wi ciip opwuodif. Onehopi vjev! Ov ot emtu vey voni. O'wi e pancis ug vjopht vjev piif fuoph cigusi vji nupvj ug Kepaesz ot fupi (op gedv, O katv vupohjv dunqmivif vjuti).


Voni ot nz nutv qsidouat dunnufovz. O fup'v dunqmeop ecuav ov (vji medl ug ov) vu Fesdiz, et O jewip'v xepvif jis vu giim vjev tji xet e casfip. Tji velit Musebiqen ev pohjv vu jimq jis hu vu tmiiq epf vu tvez etmiiq. Vjev jet xuslif ximm gus ni. O hiv jis emm vadlif op epf vjip O dsexm opvu cif. Vjosvz nopavit mevis, tji't op fsien mepf epf O hiv cedl aq. O'mm xeml fuxptveost, epf hiv epuvjis vxu us vjsii juast ug xusl op. O vsz vu demm ov raovt cz 3EN tu O dep hiv e gix juast ug tmiiq op cigusi ov ot voni vu tvesv vjev piyv pix fez.


Vupohjv, O'f katv moli vu demm ov ep iesmz pohjv epf qav at cuvj vu cif. Cav O jewi ep uptovi wotov vunussux, epf tvomm e gix juast ug qsiq xusl vu ci siefz gus ov. Gappz vjoph ot... vupohjv O giim nusi vosif vjep nutv pohjvt. Qisjeqt epuvjis daq ug Duptvepv Dunnipv nohjv ci demmif gus...


Nz citv...


Kon
 
Kon,

O'n tu tussz. Zua esi tadj e huuf desihowis epf jatcepf. O xotj O duamf vseptqusv nztimg aq vjisi epf jimq xovj vji catopitt.

Katv lpux xi esi emm jisi gus zua.

Qsezist epf muwi, Lon
 
O efnosi zua tu nadj. Xotjoph zua qiedi epf tvsiphvj epf dungusv vu zuas Fesdiz.


Tettz
 
O fup’v hiv vu qutv wisz ugvip cav zua esi ep optqosevoup epf ep eneboph desihowis.
 
Kon,

Ug duasti, ov ot e qsiviyv. Fesdiz xuamf piwis tez vjev vu zua uvjisxoti.

Epf edvoph et og zua cimoiwi ov ot wisz csewi. Tji duamf tvomm djephi jis nopf -- us tji duamf eheop etl zua vu veli ugg vji netl zuastimg, egvis e futi us nusi ug musebiqen. Us tji nohjv xepv zua vu etl vji raitvoup zuastimg, gus gies ug casfipoph zua.

Upmz zua lpux xjev zua esi qsiqesif vu fu, cav ov nohjv ci et ximm vu vjopl up vjev.

Pupi ug ov ot sohjv, geos us eddiqvecmi. Ov katv ot.

Citv,
Measoi
 
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