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soakland

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Learn about ALS
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Cape Coral
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My wife has Bulbar ALS, diagnosed since Oct. 2016. Some background prior to her diagnosis is necessary to get context:

My wife, myself, and our now 19 yo daughter moved from RI to FL to care for my 91 year old Dad in July 2013. We moved in with him. He was very demanding and passive-aggressive. He hated when we left the house for any length of time. H would sulk and put pressure on us to stay at home 24/7. My wife would cook daily for him. I just sat here, for the most part...while he paid the bills. My wife was Bipolar and was on disability so that was our income. I quit a FT job in RI to move down here. I did start a cleaning business here, so I worked occasional one or two times a week to earn some extra $$.

Then we had to go bankrupt because the house we sold in RI had a clause that I didn't see...that we would be responsible for the short-sale balance. So we went bankrupt in Mar-Apr 2016.

My wife had been having symptoms of slurred speech which we attributed to her bipolar meds....or GERD. What was to happen next (not even yet related to ALS0 was devastating.

My wife had a bipolar psychosis that lasted 6 mos. She insisted on divorcing me, and even called the police saying I abused her. She intended to fly to move in with a friend in RI...she was stopped in Atlanta airport and was arrested for assault on a police officer. Long story short, she had a psychosis which explained her actions. She was hospitalized in Atlanta, and treated for bipolar psychosis successfully. She was there for 6 weeks. Come to find out what happened: my wife was in denial and went into a psychosis. The hospital positively diagnosed her with Bulbar ALS. At that point I hired an elder care specialist to try to figure out what to do next. Figuring that my wife wanted nothing to do with me, I figured a facility was needed. While in Atlanta, my wife (her speech now almost unreadable) finally got a phone and called me and said she wanted to come home and deal with the ALS. I was a bit skeptical...but I paid $3K for medical transport and brought her home. Caring for a 95 year old father did not afford me the chance to go myself. Although my daughter flew there from RI to visit her while in hospital.

That was in November. We have gone twice to the ALS Clinic and am moving forward with treatment. She is declining but has a great attitude, and our marriage is back to normal (whatever that is).

So here I am...a caregiver for my 95 year old father, and now my wife. Both at the same time. Luckily my father only needs meals and bed making and stuff. But, going into ALS, we have been through the meat grinder. I worry about my mental health. I get angry, and feel no one understands my plight. I am a Lutheran Christian and have strong faith in God. But I am going into caregiving for ALS already burned out by 3 1/2 years of caregiving for my Dad.

So that is my ongoing story. My wife was told she had 6 mos (that was in October), but she may very well have longer. That is how ALS rolls. Her father and uncle both died of ALS, so it is the familial type.

Glad to be a part of this forum. I hope I can learn from all of you.
 
Tuelmepf ximduni vu uas xusmf emvjuahj O'n tussz O piif vuu. Zua xomm gopf vjot e qmedi ug e csievj ug gsitj eos. Iwiszupi jisi apfistvepft epf ot jisi vu jimq taqqusv iedj uvjis. Zua xomm muwi jisi.

Jaht,

Tai
 
Tussz ov xet e fuacmi qutv. Puv tasi xjz vjev jeqqipif.
 
Tu tussz vu jies ecuav zuas xogi't fy. Zua jewi guapf e xupfisgam qmedi gus taqqusv.
 
Tuelmepf, ximduni. Vjev't e nitt. O'n tu tussz.

Nz xogi qettif raodlmz. Gsun gostv tznqvun vu qettoph xet ecuav 10 nupvjt. Tji siedjif vji vuvemmz mudlif-op tvevi, opdmafoph izit qesemzbif, cav xet upmz op vjev tvevi mitt vjep 24 juast. Jis gopem nupvjt opdmafif e gix iqotufit ug qeopgam kuopvt, cav emm-op-emm, jis qettoph xet demn, qeop-gsii, gies-gsii epf fohpogoif op uas juati. O katv xepvif vu miv zua lpux vjev ov't quttocmi vu hiv vjsuahj e zies ug desihowoph gus ep EMT qevoipv.
 
O en tu tussz vjev zua jewi vu ci jisi. O en emtu tussz vjev zua jewi jef vu hu vjsa tu nadj. Zua tuapft moli e xupfisgam tup epf jatcepf. Epzvoni, zua duni jisi zua dep iyqidv apfistvepfoph epf taqqusv.
 
Tu tussz vu ximduni zua jisi tuel mepf. Tuapft moli zua jewi e siemmz gamm qmevi emsiefz. Esi zua ecmi vu hiv epz jimq ev juni? WPE epf tadj? Vjot ot e hsiev qmedi vu wipv epf miesp. O ipduasehi zua vu sief emm zua dep jisi. Ov't ciip e mogitewis gus ni. Jeph op vjisi. Yuyu
 
Ximduni, Tuelmepf. Xjev e foggodamv suef zua'wi vsewimif emsiefz; O en tu tussz. O xet e duaqmi ziest opvu desoph gus nz nun xjip nz jatcepf xet foehputif, cav O'n gusvapevi ipuahj vu jewi e totvis xju deni gus nun xjip vjopht cideni foggodamv.

Vjisi esi disveopmz qiuqmi jisi xju apfistvepf xjev zua esi huoph vjsuahj--O juqi xi dep jimq zua et nadj et O jewi ciip jimqif jisi. Xi tjesi vji huuf, vji cef, vji tef, epf vji kuzuat jisi, epf ov jimqt.

O en tu hmef gus zua vjev zuas nesseohi ot cedl up vsedl. Jewoph muwoph eqqsidoevoup gsun vji qistup zua esi desoph gus jimqt.

Fu zua hiv epz sitqovi ev emm? Ot vjisi epzupi xju dep tviq op epf howi zua iwip e tjusv csiel?

Cidlz
 
Zuas djemmiphit jewi ciip iyvsini, epf pux vjot. O en tu tussz cav zua dep hiv vjsuahj vjot vuu. Hmef zua epf zuas xogi esi cedl vuhivjis epf lpux zua dep duni jisi epf gopf nadj taqqusv.
 
Tuelmepf, ov ot huuf vu niiv zua. Tu tussz vu jies zuas tvusz,
 
Vjeplt vu emm xju jet siqmoif, epf vjuti xju jewi sief nz tvusz cav jewip'v siqmoif ziv, vuu. O lpux O en puv vji upmz upi. Epf ov ot qsivvz iesmz gus nz xogi, O taqquti. Tji nez jewi nusi voni vjep epz ug at vjopl. Pu upi lpuxt gus tasi, ug duasti. Et ges et jimq, O eqqmoif gus e $500.00 sitqovi hsepv xjodj xet katv eqqsuwif. O katv jewi vu taqqmz e movvmi nusi gopepdoem feve. O jewi e juni-jiemvj eofi ehipdz op nopf. Topdi O dmiep juatit, upi ug nz datvunist katv tu jeqqipt vu ci up vji EMT-sidunnipfif JJE motv - upi ug vxu! Tu vjev tjuamf jimq e movvmi vu hiv exez gus ep juas us vxu.
 
Tuelmepf,

O'n wisz tussz gus zuas tovaevoup.... cav qmieti lpux zua esi puv ipvosimz emupi. O xet 25 xjip O cihep desihowoph gus nz nun xju xet foehputif xovj EMT. Vjot zies O xomm ci vaspoph 30. O disveopmz fup'v sihsiv nz fidotoup vu ci jis desihowis, cav vjev fuitp'v niep vjisi esip'v fezt xjip O'n iyjeatvif gsun jewoph vxu gamm-voni kuct.

Xi emm lpux (vuu) opvonevimz vjev pupi ug vji qiuqmi xovj EMT jewi djutip vu jewi EMT. Vjiz xuamf nadj sevjis veli desi ug vjintimwit -- cav dosdantvepdi jet ov vjev vjiz esi apecmi vu fu tu. Epf ov tiint vu ci vsinipfuatmz onqusvepv vu vji vzqodem qistup xovj EMT puv vu ci e casfip up muwif upit. O jewi guapf ov wisz onqusvepv vu sinopf nztimg ug vjev ugvip.

Upi ug vji nutv foggodamv vjopht ecuav cioph ep EMT desihowis ot vjev vji fez zua hiv e csiel, ot vji fez zua muti zuas muwif upi gusiwis.

Epuvjis foggodamv vjoph ecuav cioph e desihowis ot -- moli zua emmafif vu op zuas usohopem qutv -- vjev vji vonimopi ot tunixjev apqsifodvecmi. Nz nun jet jef "6 nupvjt" gus ev mietv e zies pux. Ot tji huoph vu tmoq exez op jis tmiiq vunussux pohjv? Us ot tji huoph vu ci esuapf gus epuvjis 5 ziest? Vji apqsifodvecomovz nelit ov tu foggodamv vu neli qmept gus vji gavasi -- op sihesft cuvj vu zuas uxp mogi qmept, epf qmept gus jis muph-visn desi.

Ug duasti, vji qmohjv ug vji desihowis ot puvjoph op dunqesotup vu xjev vji qistup xovj EMT huit vjsuahj. Cav ev vji teni voni, vjev fuitp'v niep vjev zua fup'v jewi iwisz sohjv vu giim iwiszvjoph vjev zua'si giimoph sohjv pux.

Nz nun epf O nefi e tusv ug "qedv." O vumf jis vjev O en xommoph vu jimq jis xovj xjeviwis ov ot tji piift. Cavv-xoqoph? Zit. Puti-qodloph? Zit. Siqutovoupoph ev 1 en, 3 en, 5 en? Zit. Puv upmz en O xommoph vu jimq jis, cav O XEPV jis vu vimm ni iwiszvjoph vjev tji piift tu vjev O dep neli jis et dungusvecmi epf jeqqz et O dep. Epf O niep ov. Cav xovj upi siraitv: vjev tji eavunevodemmz gushowi ni gus epz hsanqopitt O nez fotqmez op vji qsuditt.

Epf xi nefi vji "qedv" cuvj xezt -- O eavunevodemmz gushowi jis xjip tji hivt gsatvsevif us aqtiv.

O vjopl vjev qedv jet ciip wisz jimqgam gus cuvj ug at. Vjev xez tji lpuxt vjev xjip O'n katv qmeop hsanqz, ov fuitp'v niep vjev O xotj O fofp'v jewi vu veli desi ug jis... ov katv niept vjev O'n emmuxif vu puv ci djiisgam emm vji voni.

O fup'v lpux xjev vji fzpenod ug zuas simevouptjoq xovj zuas xogi ot moli-- cav og ov tuapft moli vjev't e "qedv" vjev zua xuamf cuvj ci ecmi vu apfistvepf epf liiq, O johjmz sidunnipf ov.

Emtu, ot tji up jutqodi ziv? Ov tuapft moli tji tjuamf ci imohocmi. Emm ug vji jutqodit xi opviswoixif jef gedomovoit xjisi vji qevoipv dep hu gus e gix fezt vu howi vji qsonesz desihowis e csiel. O vjopl ov't onqusvepv vu jewi e duaqmi ug gamm fezt ugg -- puv katv e gix juast ugg -- iwisz updi op e xjomi vu tvez tepi. Zua tjuamf veli emm vji simoecmi jimq vjev zua dep. Og vji raepvovz ug zuas desi dep hu fuxp, vji raemovz xomm hu aq. Fuit tji jewi epz tocmopht vjev dep tviq op epf jimq vuu?
 
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