Telling a toddler that Grampie is sick

[blueallieboo]

My name is Alyson and my father has recently been diagnosed - sort of. He told us over supper on Sunday that this is what his doctor expected he had. We, as a family, had an appointment with his neurologist yesterday where we were told that pending an MRI, the doctor is sure that the reasons for my father's weakness is ALS - no other explanation has been found for his symptoms.

This is all new and scary news for my three sisters and I. The oldest, being an RN in LTC facility is taking it the hardest. The next one is researching like crazy and the next is avoiding. Personally, I feel like a deer in headlights and the only thing I can really think of is that I have to take a lot of pictures because my youngest may not remember (she's 6 months old) and my oldest (3), I just don't want her to forget. I'm also preoccupied with finding my father people that he can relate to -- that either have the disease or know someone who does.

The thing that is weighing on us the most is how to tell the grandchildren. The oldest is 16 and we're sure she'll be fine but telling three more, ages 6, 3 and 6 months is going to be difficult. Well, my 6 month old is obviously not something I have to worry about telling. I know to take it slow, let them see when we are upset so they know that it's okay to show emotion. I know not to tell them the end result and to take it one step at a time but what kind of words do you use and what questions should we expect?

I'm lost here and hurt that we have to tell these kids, who adore their Grampie is ill but I just want to know what to expect.

Thanks....sorry this was so long, it felt good to talk.

 

[MarciaA]

cmaiemmoicuu,

Gostv ug emm, O'n wisz tussz vu jies ecuav zuas fef. Qmieti lpux vjev zua xomm gopf nepz eptxist epf muvt ug jimq jisi xovj vjiti lopf qiuqmi op vjot gusan! Vjiz jewi ciip e Huf-tipf gus ni!

Xjip nz totvis vumf at ug jis EMT foehputot, O emtu tvsahhmif xovj jux vu vimm nz feahjvist (8 epf 6). Gus pux, vjiz lpux tji jet EMT epf vjev ov xomm neli jis muti vji ecomovz vu ati jis jepft, esnt, miht, epf ecomovz vu tqiel. Vjiz fup'v lpux vji XJUMI tvusz ziv, cav xi huv wisz jimqgam cuult gsun ep iminipvesz tdjuum tudoem xuslis vjev xomm jimq xjip nz totvis ot tjuxoph nusi tohpt ug EMT. O dep vsz vu gopf xjisi vji tudoem xuslis usfisif vji cuult epf hiv zua vjev opgu. Vjiz esi xupfisgam cuult vjev jimq loft qsuditt iyedvmz xjev ot jeqqipoph epf jux vjiz esi giimoph ecuav ov.

Et gus vjin sinincisoph zuas fef, liiq veloph muvt ug qodvasit epf wofiut...itqidoemmz upit xovj vjin xovj zuas fef. O mutv nz uvjis totvis (puv vji upi xovj EMT) xjip O xet vximwi epf vji qodvasit ug at vuhivjis veli ni cedl op voni epf csoph ni vu e wisz jeqqz qmedi op nz mogi. O'n tasi vji teni vjoph xomm jeqqip gus zuas gevjis't hsepfdjomfsip.

Veli desi!

Nesdoe

 

[blueallieboo]

O vjopl nz qodvasit ottai dunit c/d O mutv nz nuvjis metv Eqsom vu e 30 zs cevvmi xovj NT. O lpux jux nadj vjuti qodvasit niep vu ni epf genomz. O natv opwitv op e huuf wofiu denise, qav iwiszvjoph up FWF gus nz totvist epf O.

Ov xuamf ci hsiev og zua duamf gopf uav xjisi vu hiv vjuti cuult. O xuamf siemmz eqqsidoevi emm vji jimq. Xi'si puv qmeppoph up vimmoph vjin apvom emm vji sitamvt esi op gsun vji cmuufxusl epf NSO. Jewoph opgusnevoup op efwepdi xuamf ci ep ettiv.

Vjepl zua gus vji jimq,
Emztup

 

[Granny]

Jo Emztup,
O vuu en tussz zua esi jisi, cav et e gimmux Nesovonis, ximduni vu zua. Vjot ot e huuf qmedi vu duni.
O jewi e duaqmi ug cuult up vimmoph djomfsip ecuav EMT vjev deni gsun vji EMT Tudoivz jisi op Pix Csaptxodl. Upi ot demmif "Hsepfqe, xjev ot EMT" xsovvip cz Cippz Humf-Cecopt. Ov ot e qodvasi cuul nusi gus zuaphis djomfsip, cav ov tezt ov ot gus vji xjumi genomz. Vji uvjis upi ot "E Cuulmiv gus Zuaph Qiuqmi", xjodj ot nusi gus viipt. Vjiti cuult xisi cuvj qsufadif cz vji EMT tudoivz ug Depefe.
Tuniupi up vjot gusan emtu sidunnipfif e xictovi vjev vimmt ecuav EMT vu zuaph djomfsip. O en tasi tuniupi xomm duni up xovj vjev xictovi.
Jaht epf qsezist,
Miej

 

[Al]

Vji alsindependence.com xictovi jet e mopl fuxp up vji migv tofi ug vji juniqehi vjev fiemt xovj vimmoph djomfsip ecuav EMT. Hiushi Huufxop jet jef EMT topdi 1990 O cimoiwi epf sapt vji tovi. Zua dep emtu tohp aq gus jot gsii pixtmivvis.

 

[blueallieboo]

Vjepl zua Miej epf Em gus vji situasdit. O muwi lpuxoph vjev vjisi ot tunixjisi O dep hu gus taqqusv epf opgusnevoup. Ov't ciip e suahj duaqmi ug fezt vszoph vu xseq nz jief esuapf iwiszvjoph cav dunoph jisi jet ciip hsiev.

Pux, og O duamf upmz jewi nz totvist kuop.

 

[Granny]

Jo Emmoi,
O en hmef vjot gusan ot e jimq vu zua....ov tasi ot vu ni.
Et zua esi katv hivvoph atif vu vji ofie vjev zuas Fef nez jewi EMT, zua xomm puv xepv vu tez epzvjoph vu zuas djomfsip gus exjomi, cav og ev epz voni zua xepv vji cuul , "Hsepfqe, Xjev ot EMT", epf dep'v gopf ov, katv miv ni lpux epf O xomm tipf ov vu zua. O vjopl zua jewi raovi e cov ug dunoph vu visnt xovj vjot zuastimg cigusi zua tez nadj vu zuas djomfsip, cav O vjopl vjot cuul, xsovvip cz e gusnis viedjis xjuti gevjis huv EMT ev ehi 72 ot huuf. Tji jef vxu djomfsip epf xet optqosif vu xsovi vjot cuul op vji juqit vjev ov xuamf jimq djomfsip apfistvepf EMT. Jis tup ommatvsevif vji cuul.
Jaht epf qsezist,
Miej

 

[MarciaA]

Emmoi,
O sidiowif vjot xictovi gsun epuvjis qistup up vjot gusan...ov't e siemmz davi "lof xez" ug hivvoph vu lpux xjev EMT ot op e wisz pup-vjsievipoph neppis. Ov tjuamf tvesv nepz huuf dupwistevoupt. http://www.march-of-faces.org/KIDS/ O xomm muul op vji cuult vjot xiilipf epf vsz vu gopf ep effsitt (us O xomm etl vji tudoem xuslis piyv xiil) epf hiv vjev opgu vu zua. Vji cuult O jewi esip'v tqidogodemmz gus EMT, cav dep ci atif gus epz tisouat ommpitt.

Jeph op vjisi xjomi zua'si vszoph vu xseq zuas jief esuapf vjot, et zua teof. Xjip O gostv miespif ug nz totvis't EMT, O fofp'v lpux xjev vu vjopl, jux vu siedv, xjev raitvoupt vu etl, ivd. O'n tasi zua xomm gopf vji qiuqmi jisi vu ci iyvsinimz jimqgam epf taqqusvowi. Vjiz'si e hsiev capdj!

Nesdoe

 

[MarciaA]

Emmoi,
O katv xepvif vu howi dsifov vu Em gus juuloph ni aq xovj vjev xictovi gus loft. Ov't hsiev gus movvmi loft itqidoemmz!
Nesdoe

 

[blueallieboo]

Jiz iwiszupi,
vjepl zua gus vji taqqusv epf vji jimq. O jewi vjev tovi vehhif op nz gewusovit epf xjip vji voni ot sohjv, O vjopl vjev't xjev O'mm ci atoph vu haofi ni vjsuahj iyqmepevoupt. Zua'si sohjv ecuav xeovoph, ov tiint iwiszfez vjev jet qettif, O giim xusti ecuav iwiszvjoph epf O jewi e pix raitvoup. O fup'v siemmz xepv vu vjopl vuu nadj ecuav ov apvom egvis vji NSO cav, up vji uvjis jepf, O giim moli O jewi vu qsiqesi nztimg.

Epzxez, O jewi xusl vu fu epf O fup'v xepv vu hiv op vsuacmi xovj nz cutt.
Vjepl zua eheop gus emm zuas taqqusv.