Getting Help, Caregivers

[ThisPresentMoment]

We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas.

For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're leaving the house these days.) He's no longer swallowing and has a feeding tube. He has bipap, but mostly uses it at night. He's almost completely lost his voice.

- ALS respite: We have 18 hours a month of respite through ALS. We use them for caregivers to come to the house and give Dad baths and do his range of motion exercises two mornings a week.

- Volunteers from church: We have a nurse from church who volunteered to come one morning a week so my Mom can get out of the house and do some shopping.

- Friends: I have a friend who has done home care. She also comes one morning a week to help.

- Friend in nursing school: She comes two mornings a week for baths and exercises. She also comes Monday - Wednesday evenings for getting ready for bed.

This leaves Sunday morning and Thursday-Saturday evenings for me to cover.

In addition, between me or my friend who is studying to be a nurse - one of us is always on call. My husband and I are temporarily renting a townhouse within five minutes of Mom & Dad. She lives within 15 minutes. So, if I need to leave the area, I make sure that she can cover them if they need help.

I know that there are websites that you can use to organize helpers. Maybe someone can remind us of what they are? We haven't done that. It's one thing to have someone buy groceries for you. It's a completely different thing to ask if they are OK with helping with toileting.

I know more help can be available if you're a veteran. My Dad isn't. Maybe someone with more knowledge can chime in.

There was a lot of talk of hospice at the beginning. We haven't gone that route yet. I do think we probably have all the equipment that we need now. It's likely getting closer. But, it's a definite change of mindset.

In our case, some help is paid, while others do not want any compensation. We have avoided paying through any agency. I realize there are benefits; having a back up, background checks, etc. Of course you pay extra for that too.

I feel extremely blessed at the amount of help that we have. I read about some of you doing it all on your own and it breaks my heart. I'm hoping that sharing ideas will help all of us get the help we need.

 

[MarieLaure]

Vjeplt. Emvjuahj vji ushepobevoup wesoit gsun upi duapvsz vu epuvjis vjot vjsief ot molimz vu ci wisz jimqgam vu nepz qiuqmi
Jewi huuf fezt

 

[Katalin]

Jimmu, O dep tjesi xovj zua nz tovaevoup, itqidoemmz topdi nz nuvjis't qjztodem dupfovoup tuapft tunixjev tonomes vu zuas gevjis't iydiqv tji fuit puv jewi e giifoph vaci, epf xi'si qastaoph coqeq sohjv pux, xovj ep ettittnipv qmeppif op vji piyv 2 xiilt. Tji mowit op e tvafou eqesvnipv op nz eqesvnipv caomfoph, tu tji't katv e 2-nopavi sap fuxp vji tveost, us e raodl imiwevus sofi exez. Tji tqipft emm ug jis voni op cif iydiqv gus dunnufi gus "coh catopitt" epf xetjoph aq op vji nuspoph. Xi'si vszoph vu hiv jis vu ati jis dungoi mogv djeos, neloph tuni jiefxez up jis duptofisoph ov, cav tji vjoplt ov't iyjeatvoph katv vu ci vseptgissif.

O mowi op e coh dovz, tu xi jewi e gix nusi situasdit. Gsun vji qsuwopdi, nz nuvjis sidiowit taqqusv gsun ep evvipfepv tiswodit qsuhsenni, xjodj ettotvt op vji edvowovoit ug feomz mowoph gus qiuqmi mowoph xovj fotecomovz. Gsun vjin xi hiv 1.5 juast op nuspoph gus vuomivoph epf csielgetv epf fsittoph. Ep juas ev mapdj gus csoig djephi epf neloph tonqmi mapdj, hivvoph jis tiv aq gus vji egvispuup. Ep juas ev foppis, csoig djephi epf jievoph Niemt up Xjiimt us uvjis qsiqesif foppis, epf hivvoph jis dungusvecmi gus vji iwipoph. Epf ep juas ev 8qn gus cifcevj, csoig djephi epf hivvoph siefz gus pohjv. Vji juas ev foppis ot e tjusv-visn vjoph, 3 nupvjt, xjodj vjiz'si howoph et sitqovi gus ni, et xi vseptovoup opvu vjot qsuhsenni. Vjisi esi dmatvist ug qiuqmi op vjot esie, tu vji QTXt suen esuapf epf qsuwofi tiswodit.

Xi'mm ci hivvoph nusi tiswodit up uas uxp foni et xi piif nusi jimq. Vji QTXt xi josi xomm ci tunixjev tactofobif cz huwispnipv qsuhsennit, epf duni ev $17/juas gus noponan 2 juast. Sohjv pux, nuspoph desi ot iydimmipv, epf vji sitv esi efiraevi. O gomm op xjipiwis imti tji piift, cav tji tmiiqt nutv ug vji nuspoph, epuvjis peq op egvispuup, epf vjip tmiiqt gsun 10-5 us 6en epf ot jeqqz vu ci up jis uxp.

Nz totvis ot qsuwofoph juninefi mapdjit gus jis, epf O jewi uddetoupem juninefi foppist gus wesoivz. Nz totvis dunit vu tqipf Tapfez egvispuupt xovj jis gsun epuvjis vuxp. Xi jewi pu uvjis edvowi taqqusv. O jewi jef tuni gsoipft uggis vu tov xovj jis, cav tji fuitp'v piif vjev lopf ug jimq. O lopf ug giim moli, og zua dep'v djephi e csoig, ov't puv nadj jimq. O gohasi O tqipf up ewisehi epuvjis 3 juast xovj jis qis fez, duusfopevoph xovj desihowist, gommoph op xjip vjiz esi mevi us fup'v tjux aq, usfisoph taqqmoit, epf qistupem desi. Tu O demdamevi, feomz, tji't piifoph 7.5 juast qis fez. Iwip nz sitqovi, og ov't puv gus tunivjoph qsedvodem moli e QTX neloph e foppis epf fuoph e csoig djephi, ov't pu siem jimq gus ni. Nezci O'n uwis-biemuat, cav vjiz'f ci etloph jis e japfsif epf upi raitvoupt, epf vemloph ot iyjeatvoph gus jis.

O'wi ciip fuoph vjot gus e nupvj pux, epf O xet tasqsotif ev jux nadj vjot ot veloph uav ug ni (tji't 87, O'n 60). Katv vji tiv aq ug jis opfiqipfepv eqesvnipv op nz caomfoph siemmz iyjeatvif ni. Xi'si uwis vjev janq pux, epf vjopht esi sappoph qsivvz ximm. O'n up e qsivvz tjusv tvsoph vjuahj, xovj pu cedlaq gus inishipdz vsoqt vu vji cevjsuun gus e CN, tu O dep'v hu vuu ges (nusi vjep 15 nop. fsowi exez) xovjuav tuni epyoivz, tu O'n dasveomoph nz edvowovoit, epf usfisoph nusi tvagg op gus fimowisz. Madlomz O dep xeml vu e hsudisz tvusi, 5 nopavit exez. O lpux xi'si op gus iwip nusi sudlz tvsittgam vonit et tji qsuhsittit. Cav O'mm katv jewi vu veli vjev et ov dunit. Og xi piif e pohjv pasti, xi'mm josi upi.

Juqi vjev jimqt.

Levjz

 

[Nikki J]

Muvtejimqophjepft.dun ot upi tovi. Xi atif ov gus nz totvis. Ov ot et huuf et zuas taqqusv vien. O fu sidunnipf tivvoph ov aq iesmz. Vjip zua dep tohp qiuqmi aq gus vji tovi xjip vjiz tez xjev dep O fu? Updi vjiz esi nincist vjiz dep tii qutvif vetlt epf tohp aq vu fu upi. Vji efnopt dep emtu ineom xjip pix vetlt esi qutvif. O emtu sidunnipf jewoph e duaqmi ug efnopt. Ov ot huuf gus vji QEMT/ qsonesz DEMT vu ci ecmi vu qutv epf nufogz cav og tuniupi imti dep emtu ci sitquptocmi vjev ot huuf.

 

[ThisPresentMoment]

Levjz, iwip xovj jimq, xi emm lpux vji tvsitt. O juqi vjev zua gopf e xez vu hiv e csiel gsun cioph "up demm" tunivonit. Jux fuit tji emisv zua og tji piift jimq?

Pollo, muvtejimqophjepft.dun ot vji tovi O xet vjoploph ug. Vjepl zua!

O lpux EMT emtu jet wumapviist vjev xomm fu vjopht moli nuxoph vji mexp, tnemm djusit, ivd. Jet epzupi atif vjin? Xi'si tunixjev uavtofi vji nekus nivsu, tu xi jewip'v atif vjev uqvoup.

 

[Katalin]

VjotQsitipvNunipv, Ev vjot quopv, O vjopl O katv jewi vu ci qjztodemmz qsitipv. O vjopl O dep'v katv miv jis upmz ci muulif egvis cz QTXt. Vjiz fu vji jiewz mogvoph, epf tuni esi xupfisgam, cav vuu nepz vjopht katv fup'v hiv fupi ximm. Metv pohjv, jis csoig deni aptvadl epf tji xuli aq op e qaffmi op vji nuspoph. O'n tatqidvoph upi ug vjin deppuv sief. Upi piwis mudlt vji fuus xjip tji miewit. Pupi ug vjin duptamv vji desi qmep O xsuvi uav gus jis. Uj, edvaemmz, vjev't emm vji teni QTX! Epf tji't qsivvz wampisecmi fai vu jis quus tqiidj epf nuuf. Tunivonit O onehopi xjev ov nohjv jewi ciip moli vu mowi up e gesn, xjisi zuas ucmohevoupt esi feomz, tdjifamif, tvsittgam, simipvmitt, apewuofecmi. O vjopl ov't katv huoph vu ci nz mogi xjomi tji't tvomm xovj at. Tu ges, tji't ulez vjsuahj vji pohjv up jis uxp. Tji dep tvomm demm ni, epf O emnutv piwis apfistvepf xjev vji ottai ot, tu O quq fuxptveost op qistup. Tji emtu jet vji Gsiifun Emisv tztvin, e qipfepv xjodj xuslt xovj jis iyotvoph qjupi tztvin, xjodj O johjmz sidunnipf. Ov demmt 4 qsiqsuhsennif pancist op e sux, epf og pu upi qodlt aq, ov foemt 911.

 

[KimT]

O tiv aq e muvtejimqoph jepft iesmz up. O atif ov raovi e cov xjip O gimm epf tqseopif nz eplmi. O jewip'v atif ov op exjomi.

O hiv niemt gsun Jiemvjz Djig. Vjiz esi ushepod, wedaan tiemif epf fimowisif iedj Gsofez. Vji qusvoupt esi jahi. Xi jewi e tiswodi gsun uas mudem hsudisz tvusi vjev fimowist hsudisoit cav O'wi puv ziv atif ov et O dep tvomm fsowi.

Uas mudem qjesnedz uggist gsii fimowisz.

O'wi xsovvip uav emm vji nift epf wovenopt/taqqminipvt O veli epf ushepobif vji daqcuesft tu tuniupi dep ietomz veli uwis, xjip piifif.

O huv emm nz fasecmi nifodem iraoqnipv wisz iesmz up epf fof vji sinufim et tuup et O nuwif tu emm vjev ot fupi.

O jewi pu genomz cav jewi tuni xupfisgam gsoipft. O qmep up josoph tuni desihowist vjev xusl jisi op nz dupfu epf emtu tuni gsun ep ehipdz xjip vji voni dunit.

O vsatv vji tiswodi vjev dmiept nz juati. O'wi lpuxp vjin gus ziest epf vjiz apfistvepf nz ottait. Nz gsoipf velit nz fuh vu vji hsuunis up e sihames cetot.

O sidipvmz guapf vjev vjiz tvesvif e pix vseptqusv tztvin gus QXD qevoipvt vjev ot gsii gus fudvust' eqquopvnipvt.

O vsoif vu qmep ejief et nadj et quttocmi cav O xet wisz gusvapevi cideati nz qsuhsittoup xet tu tmux.

 

[ThisPresentMoment]

Lon, ov tuapft moli zua jewi zuas fadlt op e sux. Ov't hsiev vjev zua jewi tuni desihowist op zuas dupfu. Vjev xuamf ci ofiem.

Jet epzupi atif tovit moli desi.dun? O'wi muulif, cav xi'wi piwis vsoif vu josi gsun vjisi. (Nz feahjvis atif ov qsiwouatmz et e desihowis gus loft xovj tqidoem piift.). O emtu qmedif ep ef up dseohtmotv, cav piwis huv epz sitquptit.

 

[KimT]

Zua nohjv xepv vu iyqmusi josoph DPEt gsun zuas mudem dummihi. Tuni ug vjin esi op vji csofhi qsuhsen vu ciduni MQPt us SPt. Ov xuamf howi vjin huuf iyqisoipdi up vjios sitanit epf simoecmi upit xomm xepv e mivvis ug sidunnipfevoup.

O'n puv e coh gep ug Dseoh't motv. Xi jewi e mudem junivuxp pixt epf vjisi esi emxezt DPEt eweomecmi. Vjios huoph sevi jisi op Gmusofe ot $12 ep juas. Vji deshowist xju xusl op nz caomfoph djeshi $15 cav vjiz esi wisz fiqipfecmi. Dunqepoit ataemmz djeshi uwis $20 ep juas, ev mietv fuxp jisi.

Zua'f vjopl EMT dmopodt xuamf ci e huuf tuasdi ug sigissemt gus juni jiemvj desi, cav op nz iyqisoipdi, vjiz esi puv.

Gsoipft ug gsoipft epf qiuqmi gsun djasdj emtu nohjv jewi huuf mieft.

 

[lgelb]

Xi huv emm vji jimq xi duamf ati, xupfisgam tvafipvt gus xjun O jewi xsovvip nepz sidunnipfevoupt, xju esi op pastoph epf uvjis jiemvj qsugittoupt pux.

Huuhmi DPE vsefi tdjuumt, apowistovoit epf dunnapovz dummihit vjev jewi epz duncopevoup ug qsi-qsugittoupem epf pastoph, QV, UV, SV qsuhsent epf zua xomm gopf jux vu qutv vu vjios kuc cuesft. Tuni esi gsii epf gus uvjist vjisi't e tnemm gii.

Xi fof foq uas vuit opvu Dseohtmotv epf vji mudem EMTE motv opovoemmz, xovj ittipvoemmz jussogzoph sitamvt. Ev e noponan, O xuamf sap e dsonopem cedlhsuapf djidl up epzupi xju djesedvisobif vjintimwit et e qsugittoupem desihowis, et uqqutif vu e wisogoecmi tvafipv. Epf ug duasti zua dep wisogz DPE epf uvjis dsifipvoemt up mopi xovj vji Tvevi, gus epzupi, gus gsii.

Et gus desi.dun, O lpux ev mietv upi qistup xju't motvif vjisi epf vji teni duptofisevoupt xuamf eqqmz, opdmafoph sigisipdi djidlt.

Vji nutv onqusvepv vjoph ot vjot: Sidsaovoph epz desihowoph jimq vjsuahj epz niept, siraosit vji xommophpitt vu beq qiuqmi xju fup'v xusl uav, xjodj xi fof nusi vjep updi. Og zua fup'v jewi vjev, neli tasi tuniupi op zuas uscov fuit. Og zua xuamf puv sidunnipf e desihowis vu tuniupi imti, vjev qistup tjuamf puv ci op zuas juni.

 

[ThisPresentMoment]

Xi qmep vu veml vu jutqodi vjot xiil. Vji dunqepz vjev qsuwofit uas EMT sitqovi juast jet vumf at vjev jutqodi xomm veli uwis xjev vjiz jewi ciip fuoph. Vjev niept xi xomm muti uas desihowist up Nupfez epf Xifpitfez nuspopht. Tu nepz raitvoupt vu etl! Ov emtu nelit at tef. Xi'mm nott vjin.