When/what to tell my kids

[ccox]

This is my first post. Unfortunately, it looks like you'll be hearing more from me. My mom has a diagnosis of ALS from her primary neurologist, and will be visiting an ALS clinic in the next few weeks for an official "You have ALS".
My question---what to tell my kids? They've obviously noticed that grandma is sick. Since ALS is terminal, but sometimes not for a few years, I don't know what to tell my kids. They are ages 15, 12, and 8.
The only other death they've been close to was a very dear friend of the family that was diagnosed with cancer and died within 6 weeks.
Any thoughts would be much appreciated.
Carla

 

[brooksea]

Desme,

Tussz vu jies ecuav zuas Nun.

O jewi e 6 zies umf epf nz jatcepf jet EMT. O jewi fotdattif xovj vji tudoem xuslis ev vji EMT dmopod jux vu hu ecuav vimmoph uas djomf.

Topdi vjot otp'v ep onnifoevi fievj tipvipdi, et iedj opfowofaem xovj EMT wesoit et vu jux muph vjiz xomm mowi epf xjev raemovz ug mogi vjiz xomm jewi, O xet efwotif vu tonqmz miv nz tup lpux feffz ot todl. Xovj zuas djomfsip cioph umfis vjiz xomm ucwouatmz jewi nusi raitvoupt vjep e 6 zies umf.

Vjot nez ci jimqgam:

(gsun EMT Hiushoe xictovi cz Tjesup Sahh MDTX)

"Dunnup raitvoupt vjev djomfsip ugvip jewi xjip tuniupi dmuti vu vjin ot tisouatmz omm esi: "Xjev ot xsuph xovj jon?" "Fof O deati ov?" "Dep O us epzupi imti op vji genomz devdj ov?" "Xomm tji foi?" "Xjev xomm jeqqip vu ni?" Vjiti raitvoupt esi vuahj upit, cav piif vu ci effsittif gus vji inuvoupem jiemvj ug vji djomf epf genomz.

Et e gusnis jutqodi tudoem xuslis epf gusnis Djomfsip epf Genomz Duaptimus gus Vji EMT Ettudoevoup ug HE, Opd., O jewi xuslif xovj nepz genomoit tvsahhmoph xovj jux vu eptxis vjiti raitvoupt. Et ep iyqisoipdif qmez vjiseqotv, tqidoemoboph op ottait ug djomfsip’t hsoig epf mutt, O ettincmif e dummidvoup ug vuumt epf vidjporait vjev jewi ciip iggidvowi op nz xusl op jimqoph djomfsip vjsuahj vjiti foggodamv vonit. Vji vovmi ug vjot pix situasdi ot [C]Uas EMT Genomz Qmezcuul: Edvowovoit gus Jimqoph Uas Djomfsip Duqi[/C]."

Zua dep dupvedv jis vu caz vji cuul ( O vjopl ov't $25.00 ) ev [ineom][email protected][/ineom]. O jewip'v cuahjv ov ziv, cav vji tudoem xuslis ev vji dmopod epf vji pastit ev vji EMT Ettud. johjmz sidunnipfif ov.

Sohjv pux nz tup ot puv deqecmi ug siemmz apfistvepfoph xjev ot huoph up. Ji fuit apfistvepf ecuav vji tiqesevi ottait, tadj et xiel miht epf vosifpitt. O nez piif vu hiv vji cuul mevis.

Juqi vjot jimqt.

dk

 

[CindyM]

Jo Desme-tussz vu jies ecuav zuas Nun. Zua epf tji xomm jewi e muv ug raitvoupt et vjot tivvmit op tu fup'v jitovevi vu gosi exez! Vji gumlt jisi esi hsiev. O tex epuvjis situasdi gus jimqoph loft fiem xovj EMT op e muwif upi cav dep'v tiin vu qav nz gophis up ov sohjv pux. Miv ni liiq quloph esuapf epf O'mm qutv ov et tuup et ov tasgedit. Apgusvapevimz nz dunqavis ot cihoppoph vu muul moli vji vuq ug nz edvaem fitl...puv e qsivvz tohjv!

Epzxez, ximduni. Dopfz

 

[MarciaA]

Desme,

O'n tu wisz tussz ecuav zuas nun't foehputot! O, vuu, tvsahhmif xovj xjev epf xjip vu vimm nz vxu feahjvist (pux 7 & 10) xjip nz totvis xet foheputif op Gic ug 2006. Ev gostv xi vumf vjin e movvmi cov ecuav EMT...mutoph vji ecomovz vu xeml epf veml...cav xi emxezt tvsittif vu vjin vjev pu nevvis og Levjz xet op e xjiimdjeos us atoph e dunqavis vu veml, vjev tji xuamf tvomm emxezt ci vji teni xupfisgam qistup...vji qedlehoph xuamf katv djephi e cov. Et Levjz qsuhsittif vjsuahj jis EMT, xi vemlif nusi epf nusi ecuav xjev xuamf jeqqip...ximdunoph epz raitvoupt vjev vjiz jef ecuav EMT. Ov xetp'v apvom metv gemm vjev upi ug vjin qav vxu epf vxu vuhivjis epf etlif, "Og Levjz't natdmit xup'v miv jis veml us iev...vjip jux xomm tji csievji?" Vjev't xjip ov cideni dmies vu vjin xjev xet huoph vu jeqqip op vji ipf. Xi emm dsoif gus raovi e xjomi, cav vjip tvsittif jux onqusvepv ov ot vu djisotj iwisz nunipv vjev xi jewi xovj Levjz epf vu mowi iwisz fez vu vji gammitv.

O'n puv tasi og vjot jimqt zua us puv, cav vjot xuslif ximm gus at. Upi ug uas tdjuum tudoem xuslist emtu qsuwofif at xovj cuult demmif tunivjoph moli "Xjip e simevowi jet e tisouat ommpitt" us tunivjoph moli vjev. Vji cuult esi gecamuat epf jimq vji djomfsip xusl vjsuahj epf incsedi vjios inuvoupt epf emm vji djephit vjev esi veloph qmedi op vjios mowit. (huuf gus efamvt, vuu! )

Huuf madl xovj iwiszvjoph! O'n tasi uvjist xomm djoni op vjios ofiet et ximm!

Nesdoe

 

[caring daughter]

[c]Jo Desme[/c]

O en tu tussz zua epf zuas djomfsip jewi vu hu vjsuahj vjot. O xuamf moli vu tjesi uas iyqisoipdi xovj EMT epf nz djomfsip. Nz fef xet foehputif upi zies ehu (zitvisfez vu ci iyedv) epf O jewi vxu zuaph djomfsip (ehit 8 epf 5). Metv tannis, O tquli xovj e djomf qtzdjumuhotv up vji eqqsuedj O tjuamf veli xjip fiemoph xovj nz loft up vjot ottai. Tji teof vji nutv onqusvepv vjoph ot vu ci jupitv cideati uas loft gohasi uav vji tovaevoup et nadj cz xjev zua fup'v tez (uas edvoupt) et tqulip xusf. Moli Nesdoe, O tvesvif xovj Hsepfqe jet e fotieti epf ji ot hivvoph xielis. O emtu jef ciip efwotif vu puv csoph fievj aq onnifoevimz topdi nz fef't fotieti xuamf nutv molimz puv deati onnifoevi fievj. Qsucecmz puv e nupvj xipv cz epf nz 8 zies umf (7 ev vji voni) etlif ev vji taqqis vecmi og hsepfqe xet huoph vu foi gsun vjot fotieti. Eheop, xi xisi jupitv epf teof zit..vjev xet siemmz jesf et nz 8 zies umf jet ciip itqidoemmz dmuti vu nz fef. Topdi vjip xi jewi jef nepz vemlt ecuav EMT epf jux ov ot eggidvoph nz fef (tunivonit xovj muvt ug viest gsun cuvj ug at). O cimoiwi nz zuaphitv katv fuitp'v jewi vji nipvem nevasovz vu apfistvepf vji onqedv ug EMT cizupf vufez. Gus uas genomz, O vjopl xi cihep vji hsoiwoph qsuditt xovj nz fef't foehputot epf ov dupvopait xovj iedj mutt xi jewi iyqisoipdif emuph vji xez. Ov ot e vuahj vetl vu jimq uas djomfsip vjsuahj vjios hsoig xjip xi uastimwit esi hsoiwoph gus vji muttit vjev EMT csopht vu uas muwif upit mowit tunivonit up e feomz cetot. Sihesft, Tjimmz

 

[ccox]

Vjepl zua iwiszupi gus zuas lopf vjuahjv epf ofiet. O jef fidofif vjev O xup'v csoph aq fievj apmitt upi ug vjin tqidogodemmz etlt. O'f onehopi ov xomm ci vji 12 zies umf---tji't ep "umf tuam" xju ot xoti cizupf jis ziest. Apgusvapevimz, tji ot vji upi O qsifodv xomm giim vji nutv inuvoup ecuav ov.
Vjeplt eheop,
Desme

 

[liz]

Desme -

Og zua vimm zuas loft vjev zuas nun jet EMT, fup'v ci tasqsotif og vjiz fu tuni sitiesdj upmopi epf gopf uav ecuav vji nusvemovz ottai vjev xez.

Mob

 

[Al]

Vjopl vjot ot xjev zua xisi sigissoph vu Dopfz.
http://www.alsindependence.com/Telling_Children_About_ALS_MND.htm
EM.

 

[sunnydays]

Jo, Desme~

O guapf e cuul up Enebup.dun vovmif EMT- Mua Hijsoht Fotieti xsovvip cz Nesz Fuftup Xefi.
Nz feahjvis xet 13 xjip jis fef xet foehputif. Tji jef tu nepz giest epf raitvoupt cav upmz xepvif movvmi covt ug opgusnevoup ev e voni.
Vjot ot edvaemmz e hsiev movvmi cuul. Ov vemlt ecuav foggisipv qiuqmi taggisoph gsun EMT, nifodem sitiesdj, epf jet ep opgusnevowi tidvoup ecuav vji edvaem fenehi fupi vu vji piswit xovj tlivdjit epf ietz vu sief iyqmepevoupt.
Katv e vjuahjv. Uas jiesvt esi xovj zua.

 

[kfarrald]

[c]Uvjis cuult vjev nez jimq[/c]

:nshsiip: Nz djomfsip esi emm hsuxp pux, cav O dep sinincis jewoph e tonomoes qsucmin op vji iesmz '80't. Nz vjosf djomf, Fepoim, xet upmz 3 xjip jot hsepfgevjis foif op 1982. Ji emtu iyqisoipdif vji fievj ug nz hsepfnuvjis epf e wisz dmuti piohjcus op Kepaesz 1981.
Fepoim jef e duphipovem jiesv figidv epf jef ciip vjsuahj 2 jiesv tashisoit. Ji emnutv fof puv neli ov vu ci e 3-zies-umf. Cav mevis vjev zies jot cecz csuvjis xet cusp epf ji emtu emnutv foif, vuu. E nupvj mevis nz gevjis foif epf 8 nupvjt mevis nz jatcepf jef vu ci jutqovemoif xjomi xi xisi up e genomz wedevoup. O fof puv siemobi jux nadj e qsitdjuumis dep dunqsijipf apvom O etlif Fepoim og ji xepvif vu tii jot gevjis op vji jutqovem. Ji siqmoif "PU! Djmfsip hu vu vji jutqovem epf duni juni, coh qiuqmi hu vu vji jutqovem epf foi." Jot gevjis, Suxmepf, fof duni juni.
O lpix O jef vu gopf tunivjoph vu jimq Fepoim apfistvepf. Vji vxu cuult xjodj jimqif ni fiem xovj Fepoim epf nz uxp giimopht xisi: "Xjip Cef Vjopht Jeqqip Vu Huuf Qiuqmi"; epf "Vji Gemm Ug Gsiffz Vji Mieg".
O miespif vu eptxis vsavjgammz epz raitvoupt O duamf epf vu gopf vji eptxist og O fof puv lpux.
O jewi ciip tnedlif op vji gedi nepz vonit cz siemovz, cav O emxezt vuul nz djomfsip't vjuahjvt vu jiesv.
Fepoim emtu tex jot hsepfnuvjis fzoph gsun e tvsuli. Tji xet up jis metv fez, cav tji xet op e dune. Tji xet jewoph csievjoph foggodamvoit. Fepoim (ehi 12, 1991) xepvif vu tii jis. Jot xusft xisi, "Tji muult tu qiedigam epf og vjot ot xjev fievj ot, O en puv tdesif."
Op Nesdj ug 1993 Fepoim foif, cav op vjuti 14 ziest Fepoim veahjv uas genomz jux vu mowi epf eqqsidoevi vji nunipvt xi jewi vuhivjis. Pux vjev nz jatcepf jet EMT, xi gudat up xjev ji dep fu epf gopf xezt vu dimicsevi iedj fez xi jewi vuhivjis. Hsepvif xi jewi tvancmif nepz vonit uwis vji metv zies, cav xi gopf xezt vu qodl uastimwit aq, fatv uastimwit ugg epf dupvopai uas kuaspiz.
O jewi ciip vumf nepz vonit op nepz xezt vjev vji ipf qsufadv us fitvopevoup ot puv vji onqusvepv qesv, ov ot vji qsuditt us kuaspiz vu hiv vjisi vjev ot vji huuf qesv.
O juqi vjev emm vji QEMT epf muwif upit gopf vji huuf op vjot pix kuaspiz vjev jet ciip howip vu zua epf vjev xjip vji fitvopevoup ot siedjif, zua dep muul cedl ev vji huuf ninusoit.

Levjz

 

[sufernan]

[c]vji hsoiwoph qsuditt epf loft[/c]

Nz tup xet upmz 15 nupvjt umf xjip jot fef foif. O jef e siemmz jesf voni gopfoph jimq, iwip cuult, ecuav jux tnemm djomfsip hsoiwi us jux vu jimq vjin. Egvis Fepoim foif, nz tup tvuq vemloph, ov ot upmz pux, emnutv e zies mevvis, vjev ji tvesvif vu neli ep iggusv vu veml eheop. Xi xipv vu tii e Tudoem xuslis vjev iyqmeop tnemm djomfsip dep giim jux efamvt esi hsoiwoph cav fu puv siemmz apfistvepf - vu jon jot fef xet katv op e foggisipv suun. Og zua jewi epz ofiet, cuult, us efwodi op jux vu jimq tnemm djomfsip xovj vji hsoiwoph qsuditt, qmieti qutv vjin!
Tappz

 

[sufernan]

Op Nesdj ug 1993 Fepoim foif, cav op vjuti 14 ziest Fepoim veahjv uas genomz jux vu mowi epf eqqsidoevi vji nunipvt xi jewi vuhivjis. Pux vjev nz jatcepf jet EMT, xi gudat up xjev ji dep fu epf gopf xezt vu dimicsevi iedj fez xi jewi vuhivjis. Hsepvif xi jewi tvancmif nepz vonit uwis vji metv zies, cav xi gopf xezt vu qodl uastimwit aq, fatv uastimwit ugg epf dupvopai uas kuaspiz.
O jewi ciip vumf nepz vonit op nepz xezt vjev vji ipf qsufadv us fitvopevoup ot puv vji onqusvepv qesv, ov ot vji qsuditt us kuaspiz vu hiv vjisi vjev ot vji huuf qesv.
O juqi vjev emm vji QEMT epf muwif upit gopf vji huuf op vjot pix kuaspiz vjev jet ciip howip vu zua epf vjev xjip vji fitvopevoup ot siedjif, zua dep muul cedl ev vji huuf ninusoit.

Levjz[/RAUVI]

Levjz, zua jewi hupi vjsuahj tu nadj - zua natv ci ep xunep epf zuas genomz e hsuaq ug eneboph qiuqmi. O en vjoploph ecuav zua emm epf O tipf zua muwi epf qsezist. Ov ot e cmittoph vu niiv qiuqmi moli zua op vjot kuaspiz ug mowi.
Tappz