GigiDi
Member
- Joined
- Nov 23, 2008
- Messages
- 16
- Reason
- Loved one DX
- Country
- US
- State
- new england
- City
- Newport, Philadelphia
hi there, i'm new at this posting thing but not so new to als. some background: i'm 24, and my mom (54) was diagnosed'ed with ALS in the summer of 2004. i live in RI while my my parents & 2 younger siblings live at home in NJ. but i've moved home to be there for the final days. i've heard people say its a miracle that she has made it this long... she hasn't had her speech for over a year or two now, and lost usage of her arms & legs even before that. she's used a dynavox rather skillfully but now is really unable to control it. i'd like to say it's been a long battle, but with a disease like ALS it seems more like a long surrender. so there's that.
i've noticed that the priest is over almost every other day now, her friends are stopping by more frequently also. the woman who i suppose manages her hospice brought over the "comfort pak" just last evening. we've had a few chats. everyone is eagerly planning for thanksgiving, but realistically she may not even make it till then. she uses the bipap almost 24/7, and has been running a temperature. she is so weak and skeletal... lost almost all appetite & not much desire to stay awake. i've done some research, and i'm afraid that the dying process is starting. so there's that.
unfortunately i can barely come out of my room to spend time with her. i feel like crying ALL of the time. our family dog even comes and jumps up on the bed, curls up next to me, and whines and whines. i don't want her to see me crying. i cry all night also i barely get any sleep... my sweatshirt sleeves are both soaked through because i dont want to wet my laptop keyboard... i've been reading the forums here for a while and everyone seems so calm and at peace with everything. truth is, i am not. especially around the holidays, which were always an amazing time of the year for us, i am angry and jealous and sad... i don't like going out because i see happy families, and people shopping for their loved ones. i don't like seeing commercials that boast "gifts for mom"... etc... just constantly reminded about what i've lost.
i've had plenty of time to prepare myself for the inevidable... just wish i knew exactly how many days/hours we have left... i will never for a second let her see me cry while she's still with us. when she goes she needs to know that i am okay and she has my permission to leave... i don't want her last moments with me in hysterics... but at the same time i just want to have that cathartic moment when i let it all out. i'm very envious of everyone who is all so diplomatic and composed. any advice?
i've noticed that the priest is over almost every other day now, her friends are stopping by more frequently also. the woman who i suppose manages her hospice brought over the "comfort pak" just last evening. we've had a few chats. everyone is eagerly planning for thanksgiving, but realistically she may not even make it till then. she uses the bipap almost 24/7, and has been running a temperature. she is so weak and skeletal... lost almost all appetite & not much desire to stay awake. i've done some research, and i'm afraid that the dying process is starting. so there's that.
unfortunately i can barely come out of my room to spend time with her. i feel like crying ALL of the time. our family dog even comes and jumps up on the bed, curls up next to me, and whines and whines. i don't want her to see me crying. i cry all night also i barely get any sleep... my sweatshirt sleeves are both soaked through because i dont want to wet my laptop keyboard... i've been reading the forums here for a while and everyone seems so calm and at peace with everything. truth is, i am not. especially around the holidays, which were always an amazing time of the year for us, i am angry and jealous and sad... i don't like going out because i see happy families, and people shopping for their loved ones. i don't like seeing commercials that boast "gifts for mom"... etc... just constantly reminded about what i've lost.
i've had plenty of time to prepare myself for the inevidable... just wish i knew exactly how many days/hours we have left... i will never for a second let her see me cry while she's still with us. when she goes she needs to know that i am okay and she has my permission to leave... i don't want her last moments with me in hysterics... but at the same time i just want to have that cathartic moment when i let it all out. i'm very envious of everyone who is all so diplomatic and composed. any advice?