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carma

New member
Joined
Mar 20, 2006
Messages
5
Reason
CALS
Country
ca
State
quebec
City
montreal
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

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Hi~
I just wanted to tell you that I am praying for you. This disease is horrific. My mil also has bulbar onset and is doing poorly. Is there anyone there besides the home aids that could give you a break so you and your husband can go and spend some time together with your children? Maybe someone from a church could volunteer?
I am sorry that you and your family are suffering with this.
You are in my thoughts and prayers
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Carma,
I really feel for you. You sound like you really need a break and I guess there's no one else in your family who could step in for a week or so? I wish I was your neighbor so I could take your mil for a week and let you have your house for a short while. Your poor mil probably does realize the toll it's taking, but in her condition she just can't go there in her thinking. It's so sad.
You're very much in my thoughts. I'm glad you finally opened up to the forum. I don't see how you kept it to yourself for over three years! That's such a long time.
Hopefully you'll get some suggestions here or at least get relief by venting when you need to.
Peace,
Jane
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
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.

I agree with everybody else that you guys deserve a vacation of sorts. Maybe one of your siblings (or his) could exchange homes with you for a few days? She'd get care from them and your family would get time alone.

Regarding your qoute above, thanks for reminding us that we all wish, from time to time, that things could be different. I know you are very busy but hope you can visit again soon. Cindy
 

whimsy_1971

Active member
Joined
Jan 13, 2008
Messages
77
Country
US
State
Illinois
City
Noble
Regarding your qoute above, thanks for reminding us that we all wish, from time to time, that things could be different. I know you are very busy but hope you can visit again soon. Cindy[/QUOTE]

I DIDO This
 
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