Motherofthree
New member
- Joined
- Mar 21, 2019
- Messages
- 6
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- MA
- City
- Boston
I lost my mom 3 weeks ago. She was dignosed with genetic ALS - C9 in January 2019. It’s been a long road and she was very miserable the last couple of years. Everything was stripped from her and she was scared and in pain. About 9 weeks ago she slid off of a bed while getting cleaned and broke her leg. She was in tough shape before that but as soon as that happened things progressed quickly.
She started wearing the bipap all day and got moved to a hospice facility because my dad was having trouble doing it all himself and she was really struggling. She couldnt talk and could type in the beginning but she couldn’t really communicate her last couple of weeks. She was fighting morphine or really any medication but she was always crying or just in pain. My dad lived at the hospice place with her for those 5 weeks and I slept there 2 nights a week. It was just the two of us and it was so hard. She finally agreed to taking a small dose of morphine and we upped it and then it kept on getting upped and I don’t think she would of wanted that but she was in so much pain and we didn’t know what to do.
I have so much sadness and guilt. My dad thinks she died angry with us. My dad and I were holding her and watched her last breaths and I am just so heartbroken. I keep myself busy and then something reminds me of her and I feel like I can’t breathe. Her journey with ALS has been awful and is everyone’s and I just wish we could put an end to this awful disease. Thank you for reading this, I know you all are some of the only people that will truly understand what I’m going through.
She started wearing the bipap all day and got moved to a hospice facility because my dad was having trouble doing it all himself and she was really struggling. She couldnt talk and could type in the beginning but she couldn’t really communicate her last couple of weeks. She was fighting morphine or really any medication but she was always crying or just in pain. My dad lived at the hospice place with her for those 5 weeks and I slept there 2 nights a week. It was just the two of us and it was so hard. She finally agreed to taking a small dose of morphine and we upped it and then it kept on getting upped and I don’t think she would of wanted that but she was in so much pain and we didn’t know what to do.
I have so much sadness and guilt. My dad thinks she died angry with us. My dad and I were holding her and watched her last breaths and I am just so heartbroken. I keep myself busy and then something reminds me of her and I feel like I can’t breathe. Her journey with ALS has been awful and is everyone’s and I just wish we could put an end to this awful disease. Thank you for reading this, I know you all are some of the only people that will truly understand what I’m going through.