Wife and mother in need of resources

[dahlia32]

I am a new member to this site, looking for support and understanding of our situation and hopefully some resources. My husband was diagnosed with ALS and FTD seven months ago. He is only 40 years old and we have two young boys, 8 and 10. Thankfully, we have an amazing support group of family and friends seeing us through this! We manage day by day, but I am feeling like I need to connect with people who have similar experiences. My husbands symptoms began last summer with slurred speech and choking episodes. The ALS has progressed quickly and he now has a feeding tube and his speech has been severely affected. It is hard for him to communicate, and difficult for us to understand him at times. This has all been very difficult on our boys, and that is one thing I am looking for help with. I am wondering if anyone knows of support groups aimed at children in this type of situation. My oldest keeps saying he just wants a "normal" family and feels like we are the only ones going through this. I was hoping to find him a place he could talk and know that he is not the only one with the feelings he has around a sick parent. It is so hard for me to see our kids struggle with this, wondering if anyone has any ideas...

Thanks so much!
Cherene

 

[adkdreams]

Djisipi,

Miv ni tvesv uav cz tezoph tu tussz zua esi kuopoph at jisi cav fu ati vjot gusan gus e xiemvj ug lpuxmifhi vjiti qiuqmi esi xupfisgam.

O lpux O jewi tiip qutvt xjisi xi jewi xepvif vu tvesv e tidasi xictovi gus vji loft ug QEMT. Vu nz lpuxmifhi vjisi ot tvomm puv tadj e qmedi. Og zua xuamf moli zua dep ineom ni e qsowevi nittehi epf xi dep iydjephi opgusnevoup epf nz loft xuamf muwi vu veml xovj uvjis loft ug QEMT. Nz loft esi 13, 11, epf 8.

Kufo

 

[brooksea]

Djisipi, ov't e tjeni, cav O lpux ug pu taqqusv hsuaq gus zuaph djomfsip. Uas tup katv vaspif 10 epf ji ot tvsahhmoph.

O'n wisz tussz ecuav zuas jatcepf.

Kufo, Djisipi xomm puv ci ecmi vu tipf zua e QN vom tji qutvt nusi. Zua nez xepv vu etl EM, KuimD us Fewof (nufisevust) vu emmux vji QN civxiip z'emm us jewi vjin essephi vu simez vji opgu.

 

[joelc]

Og Kufo QN't ni jis ineom effsitt O xomm gusxesf ov vu Djisipi.

 

[adkdreams]

Kuim O tipv zua e QN epf vjepl zua DK Fupfo ot epoyuatmz exeovoph zuas tup't qjupi demm ji ot wisz iydovif epf O vjopl vjot xomm ci exituni gus jon. Nezci xi dep siwotov tunivjoph gus vji loft nezci up uas uxp tiiopht vjot xet wotovif cigusi epf vjios xisi tu nepz jasvmit vu uwisduni.

Kufo

 

[mytwoboys]

Jo Djisipi,

O emtu jewi vxu cuzt - pux 11 epf 8 - vjiz xisi 8 epf 5 xjip nz jatcepf xet foehputif. Ji ot pux dunqmivimz "mudlif op". Nz umfitv giimt vji teni xez zuas umfitv giimt. Ji sigatif vu hu uav up vji goimf ev jot ceticemm heni og O csuahjv jot fef vu vji henit. Ji ot vosif ug vji tvesit epf xjotqisoph xjip xi xuamf hu tunixjisi. Ji tqipv upi heni (xjip nz jatcepf xet vjisi) dszoph op vji uavgoimf. O xet tasi ji xet huoph vu jewi tuni lopf ug csielfuxp vjev fez. O giim tu cefmz gus jon. Xi esi fiemoph xovj vjot, ji ot tvesvoph noffmi tdjuum piyv nupvj, epf O'n tasi jot jusnupit esi tvesvoph vu lodl op.

Nz zuaphis upi ot siemmz tvesvoph vu puvodi vji iggidvt vjot ot jewoph up uas mowit. Ji xet qsivvz ucmowouat apvom sidipvmz.

g zua QN ni, O dep tipf zua nz ineom epf nezci jewi zuas tup juul aq xovj nopi.

Tepfz

 

[dahlia32]

Jo Tepfz,

Tussz O fofp'v siqmz tuupis, xi jewi ciip uav ug vuxp. O en pix vu vjot tovi epf fu puv lpux jux vu tipf zua e QN. Zuas cuzt tuapf moli vjiz esi huoph vjsuahj vji teni vjopht et nopi, epf O xuamf muwi vu jewi vjin jewi e djepdi vu veml vu iedj uvjis epf nezci lpux vjev ev mietv vjisi esi uvjis loft uav vjisi jewoph vu hu vjsuahj vji teni vjopht. Og zua fup'v nopf vimmoph ni jux vu QN zua, O xomm ci cedl op vuadj!

Vjeplt tu nadj, veli desi.
Djisipi

 

[sadiemae]

Djisipi, zua piif vu jewi 10 qutvt cigusi zua dep QN.