About 3 years ago I started taking care of my daughter who was Diagnosed with ALS in 2019. I moved in with her and took care of 24/7 and watched silently as slowly she lost her ability to walk, to use her hand and fingers, to hold her head straight ( it would fall to the sides or front) to eat, to swallow food, to stand up, to move her legs, until slowly she lost use of her extremities and her ability to speak. The terrible thing with ALS is that your mind stays bright. She knew what was going on and she knew it was terminal. We tried some treatments to slow down the progression but they pretty much couldn't do much.She had a communicating device so she could talk sometimes but by taking care of her al, the time, I knew pretty much what she wanted or needed by her expressions or where she looked.
to say the least I was completely overwhelmed by the situation and started c to get headaches and migraines every day. I have always suffered from migrainesbut my headaches and the migraines were under control before I started going over there. I started c taking fioricet for the headaches, started getting rebound headaches so I had to take more. I started noticing they kinda numbed my feeling so in a way I was able c to cope withher situation. She was very angry with her illness and why she had it. It was hereditary, so we don't know where sh we got it from. Anyways me being her primary caregiver and her mother her anger would spill onto me we high made things just that much harder. I was up to 6 a d a y of fioricet, but 2 weeks before she passes away I got sick and could go to her house. I got the fioricet down to three and the gabapentin down to 750 mg. I am also prescribed lsmictal 200 mg., lexapro 20, klonopin 1m, 2 and a half a day, vistaril 25 and ambien 10 ( which I didn't take because I thought I wouldn't be able to hear her during the night. I slept on a mattress on the floor of her bedroom.
Well on Nov. 14 she passed from a respiratory arrest and once again I was alone with y er in the hospital it is just awful. Gut wrenching to see your 32 yo daughter die in front of you and you couldn't do anything. I was destroyed. I still am. That day my dose of fioricet went from 6 to 9 and it s t ayed at 9 for about 3 weeks. I stayed at her apt. For those 3 weeks taking care of her personal business, returning medical equipment. Her funeral and cremation. I have part of her ashes here with me now in my apt. I have been able to lower my fioricet to 6.5 a day and t h e gabapentin to 750 mg but I feel awful all the time. Stomach h pains, diarrhea. I have loss like 22 pounds already. I can't sleep even adding the ambien. I have no desire to do anything and I am anxious all the time. Can anyone out there help me with a taper plan. I can only eat sandwiches cause that is what my body tolerates right now. Anyone, please help. Thank you