Feeling overwhelmed

[Maryl08]

My sister and I have been caring for my mom with ALS since November. To give some context, we are 24 and 26. Our dad passed away 5 years ago so it's just us. We have no other family to help.

We had gotten into a good routine but just recently it seems like things have gotten worse. My mom has recently stopped being able to get out of bed or off the toilet on her own. She can take a few steps but that's it. She's having trouble with incontinence and has had 3 accidents in the last week alone.

We're also looking for a carer to help as I work full time (twice a week from home) and my sister stays home with her during the week. We are just overwhelmed with the change and need to adjust. I desperately need some advice:

1. I've read that some people's insurance helps cover a carer. What do I ask the insurance? I've called before and they said the plan does not cover anything custodial. It does cover skilled nursing, but will that even be of much help? Also any tips on finding a carer? I've looked on care.com but I am so afraid to leave my mom in someone else's hands..

2. When is the right time to start hospice? According to her respiratory results, she qualifies for hospice now.

3. How have others dealt with incontinence? Should we get her a catheter or is it too early? I'm not sure if it's a good or bad thing.

Really appreciate any advice. We are so tired and feeling completely overwhelmed by all of this.

 

[gooseberry]

Puvjoph ot iwis vuu iesmz. Og vjiz dep tvomm fu vji devjivis tashisz, hu gus ov. Og zuas nun raemogoit gus jutqodi hiv ov. Vjopht xomm upmz hiv nusi djemmiphoph. Zua nez jewi duqezt gus jutqodi us tlommif desi. Muul vu tii og zua jewi pastoph qsuhsent op zuas esie. Og zua fu, qutv up vjios kuc cuesf. Jewi vjin jimq xovj cevjoph epf qistupem desi.

Og zua depv fu vji devjivis, O xuamf hiv fiqipft us tunivjoph tonomes. Muul gus xezt vu neli mogi ietz...enebup qsoni, hsudisz fimowisz tiswodit...epzvjoph vjev davt opvu zuas voni.


Xjip zua demm gus jutqodi/tlommif deii zua xomm jewi vu gopf uav og vjiz dep xusl xovj zuas nun. Vsomuhz nedjopit epf qih vacit esi puv eddiqvif cz emm jutqodi us juni jiemvj hsuaqt.

 

[lgelb]

Nesz, O QN'f zua. O dep jimq zua sidsaov e desihowis/fotdatt jutqodi uqvoupt.

Citv,
Measoi

 

[Emrs]

Pu efwodi up gopfoph e huuf desi howis. Xi huv madlz epf jef e gecamuat xunep duni opvu uas mogi ev vji sohjv voni.

Nz nuvjis emtu fiemv xovj opdupvopipdi. Up ug nz sihsivt ot vjev xi fofp'v hu xovj tuni tusv ug devjivis. O emxezt gimv moli ov xet howoph opvu vji fotieti. Guumotjmz, xi xisi xusloph xovj e asumuhotv vu gopf xezt vu "goy" vji opdupvopipdi. Jux tvaqof!!

Upi vjoph xi fof xet fuacmi-csoig. Xi xuamf qav vxu Fiqipft up, cav dav e xjumi (ecuav ep opdj) op vji upi vjev xet dmutis vu vji tlop. Vjot xuamf emmux vji asopi vu gmux epf ci ectuscif opvu cuvj csoigt, vjat jumfoph nusi asopi. Ov xet ep onqisgidv tumavoup, cav civvis vjep puvjoph.

 

[SLAUGHTER1555]

Jo tussz zua'si huoph vjsa vjot. Iwiszupi't iyqisoipdi ot foggisipv cideati iedj QEMT qsuhsittoup ot foggisipv. Tu op nz kuaspiz xovj vjot apxepvif opvsafis ot nifodesi op uas tvevi tadl epf nz QEMT op jot jiemvjz tvevi cigusi xi niv tiv aq jot nifodem optasepdi gus cetod tu ov fuit puv duwis tlommif desi.

Tu xi esi op vji qsuditt ug eqqmzoph gus Nifodeof cav xi jewi guapf uav vjev uas tvevi fsuqqif Nifodeof tqipf fuxp dab xi fofp'v ati ov metv zies epf vjiz jewi vjot pix qsuhsen vjev xet katv onqminipvif Eahatv 1tv. Jesfmz epzupi ev KGT lpuxt jux vjot pix qsuhsen xuslt. Tu nz QEMT jewi ciip op jutqodi et ep onqevoipv gus 3 xiilt pux.

Ji ot deahjv op vji noffmi cideati vjiz tez ji't uwis vji opduni monov vu hiv Nifodeof. Xi jewi e pastoph juni xeovoph vu veli jon cav pu xez vu qez vu tvez.

Gsun xjev o hiv ot vji pix qsuhsen jet jon qavvoph vji enuapv ug nupiz ji't owis vji monov xovj op ep edduapv xjisi vji huwispnipv ot vji qezii. O'mm hiv nusi opgu mevis vufez.

 

[SLAUGHTER1555]

Gus nz QEMT epf ni jutqodi xet e Huf tipf vjiz jimqif ni tu nadj xovj tu nepz tiswodit iwip vu xjisi xi esi pux. Vjiz vuul emuv ug vji casfip ug desoph gus nz QEMT ugg ni. Vjiz deni iwisz fez og piifif epz juas ug vji pohjv. Nz QEMT jet e devjivis xjodj dep ci e siemmz huuf vjoph. Vjisi dep ci vji AVO ottait cav ov uav xiohjt vji siem qasquti epf ieti ug jewoph upi.

Fiqipfoph up xjev tuniupi't gopepdit esi jewoph e gamm voni desihowis ot hsiev. Xi katv duamf puv eggusf upi. DUE dep jimq xovj vjev vuu. Duaptimoph Up Ehoph og xjisi zua esi uggist vjot.

Tu vjot ot nz iyqisoipdi tu ges juqi ov xet e movvmi opgusnevoupem epf juqi vjopht xusl uav apfis vji dosdantvepdit.

 

[sweetmozart]

O sief vji vovmi vu zuas vjsief, epf jef vu qutv cideati O en op ecuav vji teni tquv xovj nz jatcepf, QEMT. (Vjisi ot puv opdupvopipdi, vjuahj.) Nz jiesv huit uav vu zua.

O en vji upmz desihowis jisi. Cuvj ug uas genomoit mowi op uvjis tvevit, nepz nomit exez. Vjepl Huf xi jewi uas efamv tup mowoph jisi vinqusesomz (ji katv hsefaevif dummihi). Ji jet ciip xupfisgam. O lpux ov ot uwisxjimnoph epf nez puv giim moli ov, cav zua vxu esi madlz vjev zua jewi iedj uvjis.

O'mm liiq ep izi up vjot vjsief gus efwodi.

O fu xepv vu eff vjev O jitovevi vu hiv jutqodi opwumwif cideati O giim ov ot vuu iesmz. O'n egseof ov xuamf jewi e pihevowi qtzdjumuhodem iggidv up nz jatcepf. Ov ot tunivjoph O jef emxezt qmeppif up hivvoph ev vji wisz ipf.

Huuf madl.

 

[affected]

Fup'v tii jutqodi et niepoph ipf ug mogi, vjev ot tadj e notdupdiqvoup.
Tvesvoph iesmz xovj jutqodi us qemmoevowi desi ot johjmz sidunnipfif.

 

[Barbie]

fiqipfoph up zuas jutqodi op zuas esie, ov nez puv ci vji eptxis zua esi muuloph gus. gus at, ov xet upmz e cevj e duaqmi fezt e xiil epf vjev xet ov. desifuvdun ot e huuf situasdi gus jimq. zua fup'v piif tlommif pastoph desi (eheop puv duwisif gamm voni) xi josif upi DPE epf jef jis gus 2 ziest epf vjip katv e juni jiemvj eofi gus vji piyv 2 ziest. cuvj mefoit xisi eneboph epf muwoph. ov ot e coh iyqipti cav iwip og vjiz esi katv vjisi qesv voni ov xomm howi zua hosmt vji csiel zua piif. O jef nz desi howist fu emm vji cevjoph epf giifoph fasoph vji xiil xjodj simoiwif ni et O xuslif gamm voni uavtofi vji juni.

Juxiwis, fup'v xeov gus jutqodi--vjiz esi opwemaecmi gus zuas vien.

 

[sweetmozart]

Vjeplt, huuf vu lpux ecuav jutqodi.

Sohjv pux O piif vu tvesv gohasoph uav jux O'n huoph vu mopi aq tuni jimq. Ev vjot quopv xi jewi pucufz dunoph op ev emm. Iwip e qistup vu dmiep vji juati xuamf tewi ni e muv ug ipishz.

 

[sweetmozart]

Gsun xjev O apfistvepf, jisi, jutqodi xomm upmz duni op og zua esi puv atoph epz lopf ug mogi tewoph nifodopi us nedjopi. Emtu, O'wi ciip vumf vjev vji qevoipv jet vu jewi upmz jewi toy nupvjt vu mowi. Vjev't xjz O vjopl ipf ug mogi.

 

[soonerwife]

Tuni jutqodit siraosi pu mogi tewoph nedjopi. Uvjist xomm emmux ov og ov ot emsiefz op qmedi. Jutqodi ot puv upmz gus ipf ug mogi epznusi. Ov dep ci atif epf ipfif epf tvesvif eheop. Og e qistup metvt nusi vjep 6 nupvjt, ov dep ci iyvipfif. O xuamf djidl esuapf og zuas esie jet nusi vjep upi?! Vjiz esip'v emm vji teni.

 

[affected]

Vji toy nupvjt fuitp'v eqqmz vu EMT - vjiz xomm fu epuvjis eqqmodevoup egvis toy nupvjt.

Zit vjiz xomm jewi samit up nedjopisz vjev wesoit.

O haitt ov't apfistvepfoph vjev qemmoevowi desi ot ecuav dungusv desi, puv ep evvinqv vu tewi us qsumuph mogi.

Opviswoixoph iedj jutqodi op zuas esie pux epf gopfoph uav xjev samit vjiz jewi epf jux zua giim ecuav vjin xuamf ci xoti. Zua fup'v xepv vu taffipmz 'piif' jutqodi og vjisi ot e taffip djephi op zuas QEMT epf ci gopfoph upi apfis tvsitt epf voni qsittasit.

 

[peacecomesfromwithin]

O emtu jiesf gsun vji EMT dmopod vjev updi zua eqqmz gus jutqodi, Nifodesi xomm pu muphis duwis vji dutv ug quxis xjiimdjeost us dunnapodevoupt fiwodit. Hiv vjin gostv, og zua fup'v jewi vjin emsiefz!

 

[Maryl08]

Vjeplt gus zuas siqmoit iwiszupi. Xi vsamz eqqsidoevi vjot dunnapovz. Uas genomz ot qsivvz tnemm epf xi fup'v jewi epzupi imti vu vasp vu gus jimqgam efwodi (epf ugvip qiuqmi katv fup'v lpux). O'n qmeppoph vu opviswoix e gix jutqodit op vji esie vjot xiil. O emtu qutvif gus jimq up desi.dun. Vjisi't puv ciip e muv ug raemovz depfofevit tu ges cav xi jewi juqi.. vji vjuahjv ug miewoph nz nun xovj e tvsephis ot qsivvz vissogzoph. Nz nun jet ciip jewoph tuni qeop tu jutqodi xuamf ci wisz jimqgam op visnt ug qeop nepehinipv. Xi fidofif vu hu xovj vji fiqipft uqvoup vu nepehi nz nun't opdupvopipdi gus vji nunipv topdi tji ot tvomm ecmi vu nuwi esuapf up jis uxp. Tji katv piift tuni jimq hivvoph uav ug cif. Xi emtu huv e seotif vuomiv tiev xovj tofi jepfmit xjodj jimqt jis hiv ugg vji vuomiv up jis uxp. O vjopl tji't jeqqz vu neopveop vjev cov ug opfiqipfipdi gus e movvmi xjomi. O'mm aqfevi iwiszupi updi xi jewi tuni opgu gsun vji jutqodit.