thanks for being here...

[carma]

I have read hundreds of posts over the last 3 years but this is my first attempt to communicate; the need to talk finally won, I guess. I can't tell you how many times all of your posts made getting through the day possible... there are some things that only you all can, and could, possibly understand. My m-i-l was given the news( by process of elimination ) that she had ALS a little over 3 years ago; looking back there were signs before that but we could never have guessed the prognosis would be so sad. Anyway, the onset was bulbar,slurred words and some difficulty breathing. Today she is totally bed-ridden,PEG, Bi-pap at night, communicates via a dynavox but requires assistance as only one arm works and it is very limited in mobility and strength. We have in home care a few hours a day (except on week-ends) and some help from a local gov't agency. In total we get about 7-8 hours a day which is great because we have 5 kids ! My husband and I did it alone until 8 months ago but I told him I was gonna have a nervous breakdown if we didn't get help. She was so resistant to having help and we felt bad so we didn't push the issue, but she wasn't really thinking of the toll it was taking on us. Even today with the help it is still difficult ; there is a constant stream of people in and out of the house so privacy is nil and though 8 hours is helpful there are still 16 hours left in that day! My oldest is 11 and the youngest is 3 so I am still incredibly busy with the kids and my husband works full-time....needless to say we are exhausted . I have such issues with guilt because I want so much for life to different than its current state but recognize that it isn't her fault and she obviously would like for things to be different as well. My kids are getting older and I feel that I am not being the parent I long to be nor the one they deserve...We don't get the time back. And while taking care of my m-i-l is important and I believe that it is teaching them compassion, I sometimes wonder wether they will be resentful.... I am reaching the end of my rope and so I guess I am reaching out.... thanks for being out there everyone.

 

[Jeannie]

Jo~
O katv xepvif vu vimm zua vjev O en qsezoph gus zua. Vjot fotieti ot jussogod. Nz nom emtu jet camces uptiv epf ot fuoph quusmz. Ot vjisi epzupi vjisi citofit vji juni eoft vjev duamf howi zua e csiel tu zua epf zuas jatcepf dep hu epf tqipf tuni voni vuhivjis xovj zuas djomfsip? Nezci tuniupi gsun e djasdj duamf wumapviis?
O en tussz vjev zua epf zuas genomz esi taggisoph xovj vjot.
Zua esi op nz vjuahjvt epf qsezist

 

[fiddleplayer51]

Desne,
O siemmz giim gus zua. Zua tuapf moli zua siemmz piif e csiel epf O haitt vjisi't pu upi imti op zuas genomz xju duamf tviq op gus e xiil us tu? O xotj O xet zuas piohjcus tu O duamf veli zuas nom gus e xiil epf miv zua jewi zuas juati gus e tjusv xjomi. Zuas quus nom qsucecmz fuit siemobi vji vumm ov't veloph, cav op jis dupfovoup tji katv dep'v hu vjisi op jis vjoploph. Ov't tu tef.
Zua'si wisz nadj op nz vjuahjvt. O'n hmef zua gopemmz uqipif aq vu vji gusan. O fup'v tii jux zua liqv ov vu zuastimg gus uwis vjsii ziest! Vjev't tadj e muph voni.
Juqigammz zua'mm hiv tuni tahhitvoupt jisi us ev mietv hiv simoig cz wipvoph xjip zua piif vu.
Qiedi,
Kepi

 

[CindyM]

[RAUVI] jewi tadj ottait xovj haomv cideati O xepv tu nadj gus mogi vu foggisipv vjep ovt dassipv tvevi cav siduhpobi vjev ov otp'v jis geamv epf tji ucwouatmz xuamf moli gus vjopht vu ci foggisipv et ximm.[/RAUVI]

O ehsii xovj iwiszcufz imti vjev zua hazt fitiswi e wedevoup ug tusvt. Nezci upi ug zuas tocmopht (us jot) duamf iydjephi junit xovj zua gus e gix fezt? Tji'f hiv desi gsun vjin epf zuas genomz xuamf hiv voni emupi.

Sihesfoph zuas ruavi ecuwi, vjeplt gus sinopfoph at vjev xi emm xotj, gsun voni vu voni, vjev vjopht duamf ci foggisipv. O lpux zua esi wisz catz cav juqi zua dep wotov eheop tuup. Dopfz

 

[whimsy_1971]

Sihesfoph zuas ruavi ecuwi, vjeplt gus sinopfoph at vjev xi emm xotj, gsun voni vu voni, vjev vjopht duamf ci foggisipv. O lpux zua esi wisz catz cav juqi zua dep wotov eheop tuup. Dopfz[/RAUVI]

O FOFU Vjot