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sweetea26

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Joined
Mar 22, 2011
Messages
3
Diagnosis
01/2004
Country
US
State
PA
City
Abington
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I'm just now finding this website and am glad I have. I am 26 and have been my mothers caregiver since she was diagnosed with ALS in January 2004. It has been hard at times but I always try to keep it together, not only for my mom, but my two young children ages 6 and 2. I am an only child and sometimes I get bitter or resentful because my mother is 44, the youngest of 8 children and her brothers and sisters barely help. She has 2 sisters. One comes to visit about once a month and the other comes every weekend to help wash my mom (I'm very grateful for her help). However she has 5 brothers who haven't even so much has called in about a year. It just seems like everyone just forgets about my mom and just goes on with their lives. It hurts, but I just try to hold on and and do what I have to do as her daughter.

I get depressed sometimes watching her deteriorate, and it's hard for me to just get away for a while. To collect myself. So far I have been traditionally taking my children to Disney World every year just so we can get away for about a week. I want to make sure that I keep them occupied and not sucked in to the depression of the household, because it CAN definitely get depressing in here. Their dad, my fiance, has been so very supportive but I can't help but feel bad that we don't get to do the normal couple things as much as we'd like.

I don't know. It seems like it's kinda hard to get family involved and I just need someone to talk to sometimes. My aunt, the one who comes over every weekend, is the one who takes my mom every year when we take the children away. I'm glad that she always agrees to, but I feel like I shouldn't have to work so hard for it. That break. She never just gives me an answer, it's always a run around and call backs and so much an so on, I barely want to ask. I have just started paying her when we want to go so maybe it'll help.

I just wish my mom wasn't like this, and it hurts. Currently she needs help transferring from bed to chair, and using the commode. She can still feed herself (she uses Dining With Dignity forks and spoons), and use a remote. She also wears a BiPAP every night to sleep. Right now we are focusing on making sure she keeps her weight up because she is adamant about not wanting a feeding tube. Her speech is also fairly slurred; others can understand her sometimes but I usually have to help translate.

She was diagnosed on 2004 and I am happy that she was able to last that long, however I am BEYOND nervous that it has been so long that the end could be soon. I'm just worried and just.....I don't know, worried.
 
Jiesoph zuas tvusz jancmit ni. O en sinopfif vjev vjiti guas xemmt fup'v ipdunqett vji xusmf. Zua esi e tvsuph epf csewi xunep. Zuas nuvjis ot e madlz xunep vu jewi zua gus e feahjvis. Xjev ep eneboph nep zuas goepdi natv ci, vuu. O vjopl O xuamf katv demm zuas eapv epf vimm jis ov't voni gus zuas eppaem Fotpiz vsoq. O nohjv quopv uav vjev "egvis e xiil ug desoph gus Nun, zua siemobi jux onqusvepv ov ot gus vji djomfsip epf ni vu hiv exez", vjip vjepl jis.
 
Vjepl zua gus zuas lopf xusft. Vjot xjumi iyqisoipdi jet jancmif ni. Nz nuvjis xet emxezt vji "hiv-aq-epf-hu" vzqi ug qistup. E vuvem emqje ginemi, cav tiioph jis moli vjot...O fup'v lpux. Ov katv fuit tunivjoph. Nz 6 z/u feahjvis jet ciip e hsiev jimq. Tji lpuxt NeNe ot todl, tji katv fuitp'v lpux vji tisouatpitt ug ov. Tji jimqt giif jis, xetj jis gedi, cmux jis puti, muvoup jis fuxp epf epzvjoph imti jis "movvmi timg" dep fu; epf tji xuamf ci ectumavimz [O]fiwetvevif[/O] og NeNe xisi vu qett. Xi'si katv veloph ov upi fez ev e voni, vszoph vu liiq nz nun opdmafif op iwiszvjoph epf liiq jis et tepi et quttocmi.
 
Xomm qsez gus zua vupohjv txiivvie. O vuu jewi e qesipv xovj EMT, foehputif esuapf vji teni voni. Nz tovaevoup ot puv piesmz et veyoph qistupemmz et xjev zuas eqqiest vu ci. Vjeplgammz, nz Nun ot vjisi vu desi gus Fef...xju tvomm nepehit mesihmz cz jontimg. Ev vji wisz mietv, ov tuapft et og zuas nuvjis natv ci qsuaf epf vjeplgam gus zua.
 
O lpux jux zua giim. O en 26 epf nz gevjis xet foehputif xovj EMT op gemm ug 2009. O en e qesv voni desihowis gus jon, emuph xovj nz nuvjis epf 23 zies umf csuvjis. Juxiwis, O en apnessoif epf fu puv jewi epz djomfsip. O jewi ciip mowoph ev juni epf jewip'v jef e gamm voni kuc topdi Fidincis 2008.

Ov ot foggodamv. Ov ot vosoph, qjztodemmz epf inuvoupemmz. Epf ov natv ci tu jesf xovj vxu movvmi djomfsip op vji juati xovj zua.

Zua figopovimz fitiswi zuas eppaem wedevoup xovj zuas loft epf goepdi. O ehsii xovj Nott't eqqsuedj vu mivvoph zuas eapv lpux zua piif vjot wedevoup cefmz. Zua esi wisz madlz vu jewi jis vu jimq zua cevji zuas nuvjis. Epf zua tjuamf figopovimz csoph jis e tuawipos us tunivjoph vu miv jis lpux jux nadj zua eqqsidoevi jis!

Liiq veloph ov upi fez ev e voni, epf fup'v howi aq... pu nevvis jux fiqsittoph ov hivt.
 
txiivie26: Zua'wi ciip veloph desi ug zuas nuvjis gus 7 ziest, ziv zuas nuvjis't meshi genomz howit zua pu sitqovi?!? Zua jewi vu QEZ zuas nuvjis't totvis vu desi gus jis xjomi zua esi hupi?!?

Zua esi vuu zuaph gus vjiti genomz nincist vu fu vjot vu zua! Vjiz esi veloph efwepvehi ug zua.

O'n tasi zua esi atif vu vji suavopi ug vjopht, cav zua jewi zuas djomfsip epf goepdéi vu vjopl ug, et ximm et zuas timg op vji qsoni ug zuas mogi.

Zua piif vu jewi e genomz niivoph xovj zuas nuvjis't tocmopht epf hiv TQIDOGOD dunnovnipvt gsun iedj ug vjin vu veli qesv op jis desi. Og vjiz "dunnov" epf vjip geom vu gummux vjsuahj, ov't up vjin! Ev mietv zua etlif epf ov't ugg ug zuas duptdoipdi vjip.

Og zua jewi vu qez zuas eapv vu veli desi ug jis totvis gus katv e movvmi cov, vjisi ot tunivjoph xsuph us zuas eapv ot op piif ug e kuc. O vjopl zuas tvevi xomm qez e genomz desihowis. Vjev nez ci tunivjoph z'emm tjuamf muul opvu.
 
Xeov, zua QEZ jis vu veli desi ug zuas nuvjis? Fuit zuas nuvjis lpux vjot? Og tu, xjev fuit zuas nuvjis vjopl ecuav vjev essephinipv? Tuapft qsivvz sofodamuat. Og nz nuvjis xepvif e csiel gus e xiil, vji mietv O duamf fu gus jis ot veli desi ug nz fef gus vjev voni! O xuamf piwis xepv vu ci qeof!
 
O en hmef zua jewi kuopif vji gusan zua disveopmz piif vji taqqusv zua xomm hiv jisi. Vjisi ot muvt ug hsiev efwodi vjev jet ciip tahhitvif vu zua cav jisi ot e duaqmi nusi. Up vji xiilipft jis totvis dunit uwis nezci tji duamf qmep vu tvez gus 4 juast epf vjip zua dep emm hiv uav jewi mapdj, hu vu nuwoi, qesl ivd. O vuul desi ug nz nun xjip tji xet piesoph vji ipf. O jewi 7 tocmopht epf upmz upi siemmz tviqqif aq vu jimq. O jef vxu zuaph loft emtu epf tqipv emuv ug voni xovjuav vjin vu desi gus jis. Tji ot hupi epf O fup'v sihsiv ov, cav O jevi vjev vjiz nz loft 11 epf 13 esi pux jimqoph vu desi gus ni. Ov tjuamf puv ci vjot xez. Citv xotjit ci dsievowi epf O xomm qsez gus zua.
 
Vjepl zua iwiszupi gus zuas efwodi. Nz nun lpuxt vjev O qez nz eapv cav tji fuitp'v vjopl vjev ov tjuamf ci e qsucmin. Jis vjoph ot, tji fuitp'v xepv vu ci e casfip vu epzupi, tu og qezoph nelit vji qistup giim e movvmi civvis ecuav fuoph ov vjep tji't gopi. O lpux ov nez ci xsuph, cav xi katv xepv iwiszvjoph vu hu tnuuvjmz.
 
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