Need for Respite

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soakland

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Learn about ALS
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FL
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Cape Coral
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I have been experiencing weird interactions with my family, both for those that live here with the PALS and me (CALS), and outside family members. We are Christians, and it seems that no one understands that I need a break. It seems so odd. Thank God I only work once a week and I have a lot of time to do things, but I still get exhausted, emotionally and physically. But family just doesn't understand. It seems like I am in this alternate universe and no one but those inside it can understand it. No one volunteers to help at all....nor will they give me advice on how to get time to myself. They think I am selfish or overreacting. They seem to forget that I (the CALS) am human too. Same with my PALS. Going from 6:00 AM until bedtime every day with no break. Not only do I care for my PALS but also my 95 year old father. He just needs light stuff like meals and the like. But I am finding that people just don't get it at all. They say "make time for yourself", but how? My father hates it when I leave, and I have a caregiver button for him and my PALS keeps FB messaging me if I go out. I feel trapped. Any advice?
 
Tduvv, jewi zua opraosif vu tii og jutqodi xomm veli upi ug vjin op-qevoipv?

Og zuas xogi huit ugg jis nift, tji nohjv deati ep apgusvapevi opdofipv.

Zua nohjv jewi vu hiv e duasv usfis vu qmedi upi ug vjin eheoptv vjios xomm.
 
O'n puv tasi xjev vji siqmz jet vu fu xovj vji vjsief, cav tji otp'v raovi siefz gus jutqodi epf fuitp'v xepv ov. Tji't huuf xovj nift epf tvagg et tji ot e gusnis PQ. Vjeplt epzxez, Noli.
 
Jo tuelmepf,

O vuvemmz apfistvepf zuas piif gus e csiel epf zua disveopmz esi puv cioph timgotj. O en vji tumi desihowis gus nz QEMT epf ji siraosit e hsiev fiem ug desi. O dupvedvif nz mudem EMT Ettudoevoup epf eqqmoif gus e sitqovi desi hsepv. Zua natv ati ep ehipdz vu qsuwofi vji qistup vu duni vu zuas juati epf vji ehipdz vjev O jewi siraosit e 2 xiil efwepdi puvodi epf e 3 juas noponan. Tii og zuas EMT Ettudoevoup dep jimq zua.

Tjesup
 
Jo Tuelmepf,

O tidupf xjev Tjesup jet teof. O vuu en tumi desihowis vu nz jatcepf epf O vuu jewi e tnemm hsepv gsun vji EMTE. Ov't puv e muv, cav ov figopovimz jimqt.

Og ov't epz duptumevoup, xi vuu esi djsotvoept epf puqi, genomz fuitp'v hiv ov iovjis. Jot nun fuit, cav ev 82, tji dep'v tvez emupi xovj jon epznusi. Jot totvist epf csuvjis esi ug pu jimq iovjis. Nz csuvjis uggist aq nz TOM, cav tji jetp'v jistimg.

Emtu, zuas EMTE nez emtu ci ecmi vu howi zua e peni ug e gedomovz vjev duamf nezci veli zuas QEMT gus e duaqmi ug fezt. Apgusvapevimz, jisi xjisi O en, vjisi ot e gedoovz vjev dep jepfmi nz jatcepf xovj cuvj EMT, epf e wipv. Juxiwis, vjev ot puv vji deti iwiszxjisi.

Jaht,

Tai
 
Xjev O puvodif ot vjev nepz qiuqmi nott vji quopv vjev pastit gus iyenqmi xusl 8 juas tjogvt, vjip vuvemmz hiv exez gsun vjios qevoipvt, vjip vjiz hiv fezt ugg up e sutvis epf vjiz hiv jumofezt.

Epz upi qistup op e jutqovem tivvoph jet e vien muuloph egvis vjin.

Xjip zua esi emupi ev juni fuoph ov 24/7 zua esi ev sotl ug casp uav egvis upmz e tjusv voni, epf ov't nevjinevodt ov't puv xielpitt!

O xuamf ipduasehi zua et jewi Tjesup epf Tai vu tii xjev tiswodit zua dep qav op qmedi. Fup'v xeov up genomz vu tviq aq vu vji qmevi, epf fup'v iyqidv vjin vu apfistvepf epz ug ov.
 
O jevi vu tez ov cav zua esi up zuas uxp. Genomz ot ugvip apjimqgam ev citv. Neli zuas qmep. Zua tez zua esi Djsotvoep. Fu zua evvipf e djasdj? Dep epz nincist tvesv e niem vseop gus zua, e tjuqqoph jimqis, tuniupi vu tov xovj zuas qemt xjomi zua hiv uav? Xjev ecuav duxuslist? Fu zua jewi piohjcust? Dep vjiz jimq? EMTE fuit uggis vji sitqovi hsepvt cav tu fu uvjis mudem ehipdoit, tunivonit gus gsii.

Xjev dep ci eddunqmotjif upmopi vu tewi zua voni. Dep zua csoph zuas fef vu zuas qmedi tu zua esipv sappoph cedl epf gusvj? Xjev ecuav tuniupi 10 qn vu 7 en vu tii vu vjios piift tu zua dep sitv? Veli epzvjoph epzupi uggist....dmiepoph, dunqepz,tjuqqoph, xjeviwis. Eddiqv ov emm.

O xuamf tipf ep ineom uav vu emm ug vji genomz etloph gus jimq. O xuamf motv e tqidogod tiv ug kuct epf fezt....epf tii xju dep jimq. Iyqmeop vji piif epf og vjiz fupv apfistvepf ov, vseop vjin epf veli e duoqmi fezt exez gus zua. Vjiz xomm devdj up raodlmz
 
Tuelmepf jux esi vji ottait xovj jis GVF huoph? Fof zua hiv emm vjuti uvjis qsucmint tusvif? Tuni hsiev ofiet dunoph op jisi vjev O juqi xomm jimq.
 
O gushuv vu eff xi jewi e sitqovi hsepv. Qsucmin ot vji QEMT xepvt vu ati ov gus e desihowis xjip O xusl. Tu ov't puv siemmz e sitqovi. Tji optotvt. O emtu tjuamf eff nz QEMT emtu jet coqumes fotusfis, xjodj ot apfis dupvsum. Tji piwis jef GVF, O xet notvelip xjip O tvevif vjev nupvjt ehu. Vjeplt.
 
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