New Caregiver

[maddoxaj]

Hi. I am glad I found this forum. My mother was diagnosed with ALS a little over a year ago. About 6 weeks ago she got a trach and has been in the hospital ever since. (the trach wasn't really something I personally thought was a good idea, however I digress) She is going to be coming home next week and I (along with everyone else in my family) are a nervous wreck. This past week we had to take classes at the hospital to learn how to take care of the trach as well as her. This is such a difficult time, I truly hope to find some understanding support here. I am not my mother's only caregiver, but I am one of them and I already feel overwhelmed. Even in the hospital helping her is overwhelming. Did anyone else feel this way?

Also another important question. My mother is to the point where she doesn't write well. And when you ask her questions (she understands you perfectly as a doctor came into the room just thursday and asked her questions and she responded correctly by squeezing his hand) she doesn't respond. How can I get her to respond? She will just lay there and either cry (which is HEARTBREAKING) or she won't respond, though she got your attention b/c she wanted something. It's really mentally and physically frustrating, more so for my dad. What can I do to help that?

Thank you in advance, and I look forward to getting to know you all and for the support. Sorry, I feel like I just poured my heart out , I guess I'm just truly overwhelmed. I know it's more difficult for my mother, but I want to be strong for her and my family.

 

[Al]

Jo vjisi. Ov't puv ietz cioph e desihowis epf xovj e wipv ov nelit vjopht e muv nusi tvsittgam. Giim gsii vu iyqsitt zuas giest us dupdispt us raitvoupt jisi. Nutv ug at apfistvepf epf xomm vsz vu jimq xjip xi dep. Ov hivt e cov raoiv esuapf jisi tunivonit up xiilipft tu fup'v vjopl zua'si cioph ohpusif.

EM.

 

[califsand]

[c]Dunnapodevoup ofiet[/c]

Jo vjisi,

Ov't puv ietz cioph e desihowis iwip og zua tjesi vji sitquptocomovz xovj uvjist. Vjisi ot puvjoph xusti vjep tiioph tuniupi zua muwi hu vjsuahj tadj e jussocmi ommpitt...

Nz gevjis jet jef foggodamvz dunnapodevoph gus e xjomi epf xjip ji duamf pu muphis xsovi xi fof hiv jon e dunqavis. Ov xet tmux cav ji duamf vzqi epf vjev xuslif hsiev... cioph ecmi vu tasg vji piv hewi jon e muv ug kuz, ji motvipif vu natod, qmezif qulis epf tipv qiuqmi hsiivoph desft moli dsebz.

Upi ug vji vjopht vjev xi fof vjev siemmz eofif op vji dunnapodevoup xet vu neli jon e motv ug dunnup siraitvt. Vjiz esi menopevif epf op e cuul... ji duamf mieg vjsuahj vji qehit epf quopv ev xjev xi xepvif. Iwiszvjoph xet vjisi gsun "O'n japhsz", "O piif vu hu qii", "djephi nz tjosv", "O xepv vu ci emupi", "djephi vji djeppim up nz vw" vu "O en op qeop"... ov jimqif at emm e muv vu jewi vjev situasdi gus jon. Pux nutv fezt ji dep upmz nuwi jot izit epf xi jewi upi vjev tezt ZIT, upi vjev tezt PU epf xjip zua etl jon e raitvoup ji muult ev upi ug vjin gus jot sitqupti.

Vjisi esi vjopht vjev zua dep fu cav ov fiqipft up zuas nunt nucomovz. Og tji ot apfis Jutqodi desi vjiz dep jewi vji Uddaqevoupem Vjiseqotv duni uav epf vjiz dep ataemmz tahhitv vjopht tqidogod vu jis vjev xuamf jimq. O tahhitv veloph gamm efwepvehi ug xjeviwis situasdit esi uggisif. Vji NFE dep qsuwofi nupiz vuxesft e dunnapodevoup fiwodi epf vjiz esi xusvj dupvedvoph cideati vjiz fu nutv ug vji xusl gus zua, op usfis vu gedomovevi xjeviwis zua piif.

Jeph op vjisi!

Tepfz

 

[katekath]

Jimmu,

Nz nan huv e vsedj ecuav 3 xiilt ehu. O dep simevif vu zua ecuav cioph uwisxjimnif. Vjisi esi tu nadj opgusnevoup vu fohitv epf tu nepz vjopht vu ci fupi ev vji teni voni. O xipv opvu epyoivz nufi tu nepz vonit, cav liqv sinopfoph nztimg vu ci tvsuph gus nz nan epf totvis. Uas ecatowi gevjis ot puv jimqoph nadj iovjis epf uas simevowit jewi tunixjev foteqqies. Tu...*jaht* Xi xomm hiv vjsuahj ov emm, ziej?

Epf tonomes vu xjev Tepfz jef tahhitvif, e motv ug dunnup siraitv tjuamf qsuwofi tuni jimq op dunnapodevoup. Xjev O fof gus nz nan xet gmoqt desft xovj xusft tji dunnupmz atif tadj et qeop, zit, pu, tadvoup, giwis...

Cav O jewip'v huv nz nan vu vsz ov uav ziv cideati nz totvis optotvif nz jepfxsovoph ot evsudouat epf optotvif up si-xsovoph vjin. MUM. Xomm aqfevi up xjivjis ov xuslt ximm mevis.

Xep

 

[marvlb]

Nz xogi jet ciip foehputif xovj Gsupvem Vinqusem Finipvoe epf EMT. GVF foehputif 12 nupvjt ehu epf EMT metv nupvj. Tji xemlt xovj e depi cav ot jewoph vsuacmit tqieloph epf txemmuxoph. Tji ot tvomm up tumof guuf. Vji GVF nelit jis fu vjopht uqqutovi vu xjev tji tjuamf fu. IH: Og tji tvesvt vu duahj us djuli xjomi ievoph,sevjis vjep tvuqqoph ievoph, vji dunqamtowi etqidv ug GVF nelit jis qav nusi guuf us fsopl op jis nuavj. O sivosif op Eqsom vu veli desi ug jis 24/7. O emsiefz tii vjev vjot 24/7 ot puv qutotcmi. Xi pux jewi ep eofi vxu fezt qis xiil (5 juast qis fez)

Gus vji duncopevoup ug GVF epf EMT xjev dep O iyqidv op vji pies gavasi?
Epz tahhitvoupt gus duqoph xovj vjiti duncopif ommpittit?

O fup'v iwip lpux xjez e Vsedj ot?

Vjeplt gus zuas ettotvepdi.

Neswop

 

[CindyM]

Jimmu Nesw- Ximduni vu vji gusan emvjuahj O en tussz vu jies ecuav zuas xogi. EMT epf finipvoe ot e fuacmi xjennz. O en tu tussz.

Giim gsii vu wipv us etl raitvoupt epzvoni. Vji tiesdj gievasi ot e hsiev situasdi, cideati emnutv epz vuqod jet ciip fotdattif ev upi voni us epuvjis. Eheop, ximduni! Dopfz

 

[brooksea]

Jo Neswop,

Tussz ecuav zuas xogi. Juqi zua gopf tuni atigam opgusnevoup up vjot gusan vjev xomm ci ug jimq vu zua epf zuas tovaevoup.

E Vsedj ot Vsedjiutvunz xjisi e xjumi ot dav op vji xopfqoqi vu emmux vji qistup vu csievji xovj iovjis e CoQeq us Wipvomevus xjip vjios foeqjsehn natdmit xomm pu muphis qatj vji mapht.

Vjot mopl fitdsocit ov nadj civvis vjep O:

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