- Dec 23, 2015
- Loved one DX
My mom was diagnosed with FTD in February of this year and then diagnosed with ALS in September. We were told that it's rare for the FTD to happen first but not unheard of. We started noticing changes about two years ago and after taking her to numerous doctors we were told its FTD. I feel like we had just began udjusting to the FTD and then ALS started being mentioned and months later we are sitting in a great big hospital hours away from home with the kindest Doctor telling us my mom has ALS. As of a few weeks ago she lost her ability to talk. It's so frustrating to not know what she wants or understand what she's trying to say (she still tries and the beginning of words come out but we can't decipher it) we tried flash cards, having her type on the iPad, having her point at pictures of common things on the iPad but no luck. Then, last Thursday she was having difficulty breathing and we rushed her to the ER. Turns out she aspeirated. She's been in the hospital since, is now in ICU because she coded. Yesterday she was doing really well and the doctor thought it was time to wean her off of her breathing tube, she did great until the tube was fully removed and she coded again. We are now looking at a tracheotomy and feeding tube. This completely scares me because I don't want my mom to need tubes to live. I want her healthy and back to normal. I had been handling all of this relatively well but now the tears just don't stop. It doesn't help that I'm 7 months pregnant with their first grandchild and I keep thinking that I want my mom to talk to about pregnancy, to see her grandchild, to hold her, to have a relationship with her granddaughter and this can't happen. I know the tracheotomy and the feeding tube will tremendously help her and she still walks and likes to sit with us and hear us talk so she has some quality of life but I somehow feel so guilty for filling her with tubes. I want to get to the place where I fully feel that this is the right decision all around not the right decision because my dad and I aren't ready to let go. My aunt assures me we are doing the right thing because my mom still walks and interacts as best she can with us. I just don't know how to handle so many changes all at once. I think this turned more into a rant than anything but either way, thank you for just reading.