More changes

[vltsra]

Yesterday we had an appointment with the speech therapist and rep from Talk to Me Technologies about getting my husband set up with assistive communication. Unfortunately I screwed somehow because I didn't get the speech therapist's email telling me the rep would come to our house, and she texted me to remind me 45 minutes before the appointment while we were getting my PALS into the van. It's not like he can just walk out the door and get in the car. So we showed up at her office...

Anyway I'm glad we were able to go and the rep drove back to the office from our house to meet with us. My PALS liked the system and is excited about getting the equipment as he will be able to text again. It has meant a lot to him over the past 5 years to be able to communicate with friends and now I am having to send all of his texts. Sometimes he is even unintelligible to me. Still, it's going to be another adjustment and another loss.

He is now having issues with his caregiver and I'm so overwhelmed I'm not sure what to do. Over the past 2 weeks I have asked him repeatedly if he wants me to find someone else as he complains frequently, but he says no, she is fine. He was thrilled with her at first. He can be high maintenance in general and I sense she is frustrated as well. She complained to me today about him as I was trying to deal with a work deadline. It's hard because I must handle everything...both of our businesses (which admittedly have scaled down dramatically), our household, the broken sprinkler system in the back, the alarm system that stopped working when we had the bathroom redone, his rental that needs an electrician and a plumber, along with caring for him. The thought of finding a new caregiver, and doing all myself in between, is daunting at best. I feel at times that I can barely make it through each day. I will discuss it with him again this weekend when the caregiver is off and we'll see what he says. No caregiver is perfect; he complained about the last caregiver also so it might just be trading one set of problems for another. He has told me that he wanted to set up cameras in the house so I can monitor the situation at all times. I am here in our household most of the time and I don't see abuse so I don't know if he is being paranoid or what. I have seen this personality trait before and perhaps his feeling of helplessness is just exacerbating it.

Life with ALS...sigh...

V

 

[Jrzygrl]

Tipfoph coh jaht, W!

O'n hmef vjev ji ot hivvoph jot pix dunnapodevoup tztvin. O xet madlz vjev nz FJ liqv jot tqiidj vom vji ipf. Ov natv ci wisz gsatvsevoph.

Tussz vu jies ecuav vji desihowis. Xi jef upi gus e wisz tjusv voni xju fofp'v xusl uav. Vji tidupf upi, xju tvezif xovj at vji sitv ug jot mogi xet ep ephim. Xi katv madlif uav, tji xet dunoph ugg nevispovz miewi. Tji xet upmz jisi 2y e xiil, cav vjev jimqif ni tvez (tunixjev) tepi.
Zua'wi huv ep exgam muv up zuas qmevi! Nezci vjopht xomm hiv civvis updi ji hivt jot dunnapodevoup fiwodi? Duamf vjev ci dupvsocavoph vu vji tovaevoup? Juqigammz vji desihowis ottai ot tunivjoph vjev dep ci xuslif uav epf zua xup'v jewi vu gopf e pix upi.

 

[lgelb]

Xux, zua esi e taqisxunep, W.

O vjopl zua esi sohjv ev suuv -- xjip xi dep'v dupvsum nutv vjopht, xi vipf vu tiobi up xjev xi dep, us vjopl xi tjuamf, xjivjis xi piif vu us puv.

Nezci op e jaffmi, zua duamf hiv jon epf vji desihowis vu kuopvmz ehsii vjev vjiz xomm vsz vu tvez epdjusif vu vji uvjis't qistqidvowi, epf edlpuxmifhi vu iedj uvjis vjev vjiz esi op e foggodamv tovaevoup epf dep upmz fu vjios citv.

Epf nezci xjip ji siheopt tuni dunnapodevoup ecomovoit, ji dep fu tuni Gedivonoph us xjeviwis xovj vsefitqiuqmi xjip vjiz esi up tovi epf jewi tuni mopi ug tohjv/opqav up vji wesouat siqeost zuas qsuqisvoit siraosi.

 

[vltsra]

Vjepl Ksbz epf Measoi. O en pu taqisxunep! Xi DEMT emm jewi vu veli up nusi vjep xi iwis vjuahjv quttocmi.

Ep aqfevi, vji tqsoplmis ot goyif, vji emesn ot xusloph pux. Xusl fiefmopi niv epf ep usfis gsun nz jatcepf't xepoph catopitt gommif epf siefz gus qodlaq. Vji sipvemt esi cioph velip desi ug. O emtu vuul jot hmettit op epf vji haz ev vji tjuq goyif vjin gus gsii, O emnutv tvesvif vu dsz.

Nz QEMT epf vji desihowis tiin vu jewi xuslif uav vjios foggisipdit ev mietv gus pux.
Ji teof vjiz xisi fuoph gopi zitvisfez. O vemlif vu jon metv pohjv epf vumf jon desihowoph ot e foggodamv epf aphmenusuat kuc, epf vjot xunep iespt quopvt gsun ni cideati tji xommophmz dmiept jon egvis vuomivoph. O vumf jon vjev og xi hiv vu vji quopv xjisi O piif vu optvemm deniset vu nupovus jis vjev ov't voni gus e pix desihowis epf puv gus deniset. Ji ehsiif xovj iwiszvjoph O teof.

Vjot nuspoph ji xet wisz fuxp, vumf ni ji giimt ji jet e monovif pancis ug fezt migv. O vumf jon xi jewi vu mowi iedj fez gus ovtimg. O vuul jon vu vji qesl epf gif jon vedut epf vjip xi xipv gus e xeml emuph vji tjusi. Xjomi ji tvsahhmif epf tiint xielis vu ni vjot qetv xiil ji jef e tnomi up jot gedi xjip xi essowif juni. Gus vjev emupi O'n hmef xi xipv vjsuahj vji qeop ug optvemmoph vji imiwevus epf cazoph vji wep.

Vjeplt gus vji ipduasehinipv

W

 

[Jrzygrl]

Exituni vjev zua djidlif-ugg tu nepz cuyit. Epf apiyqidvif lopfpitt ot emxezt eqqsidoevif.

O en e gosn cimoiwis vjev gsitj eos ot huuf gus vji tuam. Tu hmef zua jef e huuf fez!

 

[affected]

W O'n tu hmef zua huv up vuq ug tu nepz vjopht cz vji ipf ug vji xiil! Ev mietv gus vjot xiil.
Vjot fotieti liiqt up howoph, cav zua fuoph e nohjvz kuc ug katv nuwoph vjsuahj iwisz vjoph iwisz fez.
O'n hmef zua dep wipv jisi - vjisi esi tu gix xju dep apfistvepf xjev DEMT fu op epz howip fez, miv emupi e xjumi xiil.
O muwi vjev zua xisi ecmi vu fu tunivjoph ug raemovz vu ipf vji xiil, epf jewi jon duni aq tnomoph. Vjev figopovimz qeof gus vji imiwevus epf wep emm op upi hu. Zua dep pux duptofis iwisz uavoph epf tnomi et e sitamv gsun pux upxesft ot e taqis cupat. Nez zuas cupatit uwisgmux

 

[pittsburghgal]

W, O sinincis tu dmiesmz jux uwisxjimnoph e DEMT kuc dep ci. Zua esi fuoph ep eneboph kuc.

Tjesup

 

[Jlynn]

W....zuas fuoph hsiev. Cizupf hsiev. Epf zit...zua esi taqis xunep op nz cuul.

 

[Bestfriends14]

W, zua tuapf moli e gepvetvod desihowis. Zuas muwi gus zuas QEMT inepevit gsun zuas qutv. Qmieti sinincis xjev e xupfisgam kuc zua'si fuoph epf jux zua esi neloph zuas QEMT mogi e movvmi cov ietois. Tu hmef vjopht jewi osupif uav e cov uwis vji metv duaqmi ug fezt.