almondjoy
Member
- Joined
- Feb 11, 2012
- Messages
- 10
- Diagnosis
- 09/2009
- Country
- US
- State
- Ohio
- City
- Bellevue
I am 25 and the caregiver for my mom, who is 56 and was diagnosed with ALS in September 2009. She is completely unable to move any part of her body from her chest down. She still has very limited movement of her hands, but her index fingers are the only ones that she can really control the movement at all. She has very limited speaking abilities at this point; she can still talk, but it is very tiring for her and she speaks very slowly and runs out of breath. For some time, her appetite has been decreasing. Two months ago, she went from eating one decent size meal a day, to maybe a few bites of one or two different foods. She was having difficulty swallowing, but we managed to find soft foods that worked for her, and still did not have sugar or dairy in them (which both upset her stomach and give her phlegm). Since then her eating has continued to taper off and for the past week, she has eaten nothing but ice (sometimes flavored with a bit of unsweetened fruit juice). She also has mostly stopped drinking. She says that even though food smells good, she just doesn't feel hungry, and last several times that she ate (over a week ago) she only managed to get down five blueberries, and said she still felt totally full as if she had eaten a full meal. Basically, drinking also makes her feel full and she said that even though her mouth is dry, she just doesn't feel like drinking.
I guess I am wondering if anyone else has reached a similar stage with a loved one and can offer any feedback on how quickly they digressed after stopping eating and almost completely stopping drinking (apart from ice). My mom has chosen not to have a feeding tube or any kind of life-prolonging treatment, and asks only that we keep her as comfortable as possible until she goes home to heaven. I have tried to prepare ahead as much as possible, and have planned her funeral and burial with her help, which may seem odd to some people, but has actually been very special for us. A lot of people are asking how long I think my mom has and while I realize that everyones' journey through ALS is different, if anyone can tell me how long their loved one lasted after reaching a similar point, I would be very appreciative. I know that her desire is to die before she reaches the point of being totally unable to communicate or move at all, especially since she feels this would be so difficult for my younger brothers and sisters (who are middle school age). While I will be sad to see my mom die, for now, I am treasuring every moment that I have to care for her and storing up memories for when she is gone. Thank you! (Sorry for the extremely long post.)
I guess I am wondering if anyone else has reached a similar stage with a loved one and can offer any feedback on how quickly they digressed after stopping eating and almost completely stopping drinking (apart from ice). My mom has chosen not to have a feeding tube or any kind of life-prolonging treatment, and asks only that we keep her as comfortable as possible until she goes home to heaven. I have tried to prepare ahead as much as possible, and have planned her funeral and burial with her help, which may seem odd to some people, but has actually been very special for us. A lot of people are asking how long I think my mom has and while I realize that everyones' journey through ALS is different, if anyone can tell me how long their loved one lasted after reaching a similar point, I would be very appreciative. I know that her desire is to die before she reaches the point of being totally unable to communicate or move at all, especially since she feels this would be so difficult for my younger brothers and sisters (who are middle school age). While I will be sad to see my mom die, for now, I am treasuring every moment that I have to care for her and storing up memories for when she is gone. Thank you! (Sorry for the extremely long post.)
