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CALS
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aB
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st.albert
my mom was diagnosed with als over 8 years ago. i am her daughter and her full time caregiver. 12 hours a day. she has 24 hour care. i am very much struggling with taking care of her. she is not dying gracefully and takes everything out on me. she is in pain everyday and is cranky everyday. i wish she didnt have to go through this and i cant really help her. she only has a little bit of movement in her hand. she still gets in her wheelchair but is in pain. she gets very mean with me and i feel frustrated. i wish i knew when this was going to end. no one will tell me of course. the doctors dont like to do that. i dont want my mom gone i just wish i knew when this pain would end.
 
Danielle,
Is there anyone that can give you a break for a few hours weekly? Can you afford a health aid coming in occassionally so you can take some time foryourself? If not, maybe I can help.
Stu [email protected] 949-488-9894
 
danielle,

First of all welcome to the forum. Sorry about your mom. If she is in pain, then she will be tough to live with. That's a fact. Pain can change your whole outlook on life. Has the doc prescribed anything to help her with the pain? What about anti-depressants? She may also have a little Emotional Lability.

Sounds like you may need a break. Can you get respite care?

By the way, the docs don't know when it will end. Every pALS is different. 8 years is beyond the average "statistic" for ALS survival.

I hope you will continue to visit the forum for support.
 
yes i have help occasionally. i have been doing this full time for months now and just recently i cant seem to deal with it very well. i just wish someone could tell me when it would be over. i know my mom is different than the average person with als thank goodness. that i guess is why it is just hard not knowing how long this will continue. she is on antidepressants, rilutek, many pain meds, morophine, etc. i think maybe i should have the meds checked? stronger or something. im just having a hard time not knowing if the end is close or very far away! just feel like screaming some days. so hard
 
Danielle-
Yes, talk to her doctors about her meds. If the pain meds are not doing their job, let the doctors know. Sometimes it does take some adjustment. But you mother should get some relief.

Pain will make anyone cranky & I'm sure she does not mean to take it out on you. You just happen to be there, unfortunately. I think she is scared, just as you are scared.
Please talk to her doctors, and to people at her clinic (?) to get more help.
A 12 hour shift is too much for you to do!

Do a search here for "compassion fatigue". What you are feeling is very normal; but I know that doesn't make it any better. Please keep coming here & venting.
 
Hey Danielle, Sorry to hear what you and your mom is going threw. I have bulbar palsy its a little worse then als. My diagnosed was about 5 or 6 years ago. I have alot of pain and tremors are not stopping. When the doctors can't stop the pain usually the meds take you out. sorry to be so blunt but, thats what we deal with. The End is different for all of us. I'm almost there and I'm still walking with a cane. The pain that I have is so hard to deal with I know what your mom is going threw. Have the doctors check your moms meds or sign up to Hospice. The will help out alot. i'm sorry its to hard to keep typing but take care, you and your mom.:lol:
 
Bulbar Palsy is worse than ALS? Really? You are the first person I have ever heard say that.
 
thank you all for talking to me. it does help me feel much better actually. i will talk to her doctors about the meds. something needs to change thats for sure. my mom is not going into hospice care she has decided to stay at home and pass away. unfortunatly it really feels like time for her to go on and pass away. i just cant stand her feeling like this anymore or myself for that matter. this disease is discusting for everyone involved. i am so sorry for anyone who has to go through this themselves and family. its nice there is people out there who understand though. does anyone know of signs that i could be watching for for the end stages of this horrible disease?
 
You should be able to have hospice in your home for your mom I would think.
 
I very much feel what you are going though...although my mom was just diagnosed last march, I am her primary caregiver. Her and my dad are divorced and I don't have any brothers or sisters. My mom is progressing very fast, she is already confined to a hospital bed, can't eat anything (strickly peg), and only has movement of her right hand which is going fast. I cut back to working part time and I am there pretty much around the clock when I am not at work...It is emotionally and physically overwhelming! But I am all she has except for a few brothers and sisters that help out a few times a week. I am only 23 years old and just got married in april! I a beginning to get extremely depressed because I have to watch my mom die a little every day and the physical aspect of it is really taking a toll on me. I stay with her 5 nights out of the week and I am there during the day 4 days during the week, other than that I am working! I need help or I am going to have emotional/physical breakdown soon! I don't know how much more 1 person can take... On top of everything, all of the people I have helping me out are starting to backout on me because it is too overwhelming and emotional for them...How do they think I feel I don't have a choice she is my only family! Sorry to vent on you but I gotta get it out! If you need to talk I am here for you!
 
Kellyh,
please vent on me! i am feeling EXACTLY how you are feeling. its kinda nice to hear it from someone else i thought it was just me! i unfortunatly have a sister that only cares about herself. my life is officially stopped until my moms life ends unfortunatly. i am only 30 years old and have not begun any life. i live in her basement and take care of her all day long. i know how you are feeling only too well. my mom has been divorced twice now and my sister is useless comes here and cries about her own "stressful" life then pisses off and goes on with her life. i have not spoken to her in 4 months because of this. i am the only one mom has and the same is happening with her other caregivers they are all going away and i am here to pick up ALL the pieces! its like a whole pile of shit has been dumped on my head and i cant get out. people tell me to take time for myself and i try. but that doesnt really help because my mind is always on her 24 hours a day. sorry to vent back at ya!
 
I know exactly how you feel...I only have a few hours a week to myself and even then I am worried about what is going on or feel guilty that I am not taking care of her. She is getting to the point where she will not be communicate at all! I don't know what I will do then. It just feels like there is something going on and someone that is supposed to be helping out is backing out on me. I don't know how much I can take....I can't believe you have been dealing with this for 8 years I have only been dealing with it for about a year and a half and just over the past 6 months my mom has become strictly dependent on someone else. I can only imagine what you are going through. Your sister is so heartless to even complain about her own life, given what your mom is going though for one and then what you are dealing with as her primary caregiver. Like I said I am here if you need to talk...It would be nice to talk to someone in my boat for once!
 
hi everyone well things have not been good here. my mom has moved into another stage of this stupid disease. we have her name on a list for a bed in a local hospital. it is now to the point where i cannot give her what she needs. i feel terrible but i dont have the resources to do the dying part of this disease. things are not good.
 
Sorry to hear this!
Try to take care of yourself too!
 
oh sweetie, i hope your mom gets the help she needs soon. not only will she be taken care of, you will be taken of then as well.....you have been an amazing daughter to have done so much for her......god's peace to you
 
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