LisaM
Member
- Joined
- Jan 9, 2008
- Messages
- 21
- Reason
- Loved one DX
- Diagnosis
- 11/2007
- Country
- US
- State
- California
- City
- Los Angeles
Hello,
It's been 3.5 years since my dad started noticing symptoms and about 1.5 years since he was officially diagnosed. At this point he is unable to use his legs and his arms. No need to outline the changing struggle for both he, and my mom and I who help take care of him, everyone here is all too familiar I am sure. We do the best we can every day.
Now I am at the next new juncture I suppose and feel clueless for the first time ...
For the last few months he's been coughing when he drinks (sometimes eats) and his inability to speak more than just a couple words is clearly noticeable. Tonight he went to call my name and nothing came out for the first two tries. Ironically, I have been watching Stephen Hawking's interviews recently which brought a mental picture to my mind along with two patients I encountered at the hospital for the first time (i'm a medical social work intern) who were unable to speak or move (not ALS related) which only added to these mental pictures - I guess these are the signs for me to wake up and start paying attention again.
A few months ago the pressure became too much for me so I sort of stopped paying as much attention and just went through the necessary motions for his care without thinking too much.
Here I am now and I am really scared for the first time and don't know what to expect or do anymore. I'm picturing him as a prisoner in his body, especially if the little motion he has in his neck and right fingers (enough to push his electric wheelchair joystick if his arm is positioned just right) disappears. His vitals and organs always test so healthy, doctors always say that his test results are better than theirs. In a way I am scared that he is going to live a long time as a person who can't move or talk and it seems so torturous to live like that. I hope this doesn't sound cruel and that I am being able to express my thoughts and fears accurately.
I guess my question is What do I expect these next steps to look like? And how do I prepare for a day when maybe he wont be able to speak to make his needs known? Is there something i should be doing or thinking now? I help people with hard medical situations and can't seem to help myself or my family...go figure. In my defense, this situation is still by far the hardest of anything I have seen at the hospital in the last 6 months of interning there.
Any thoughts would be appreciated
Thank you.
It's been 3.5 years since my dad started noticing symptoms and about 1.5 years since he was officially diagnosed. At this point he is unable to use his legs and his arms. No need to outline the changing struggle for both he, and my mom and I who help take care of him, everyone here is all too familiar I am sure. We do the best we can every day.
Now I am at the next new juncture I suppose and feel clueless for the first time ...
For the last few months he's been coughing when he drinks (sometimes eats) and his inability to speak more than just a couple words is clearly noticeable. Tonight he went to call my name and nothing came out for the first two tries. Ironically, I have been watching Stephen Hawking's interviews recently which brought a mental picture to my mind along with two patients I encountered at the hospital for the first time (i'm a medical social work intern) who were unable to speak or move (not ALS related) which only added to these mental pictures - I guess these are the signs for me to wake up and start paying attention again.
A few months ago the pressure became too much for me so I sort of stopped paying as much attention and just went through the necessary motions for his care without thinking too much.
Here I am now and I am really scared for the first time and don't know what to expect or do anymore. I'm picturing him as a prisoner in his body, especially if the little motion he has in his neck and right fingers (enough to push his electric wheelchair joystick if his arm is positioned just right) disappears. His vitals and organs always test so healthy, doctors always say that his test results are better than theirs. In a way I am scared that he is going to live a long time as a person who can't move or talk and it seems so torturous to live like that. I hope this doesn't sound cruel and that I am being able to express my thoughts and fears accurately.
I guess my question is What do I expect these next steps to look like? And how do I prepare for a day when maybe he wont be able to speak to make his needs known? Is there something i should be doing or thinking now? I help people with hard medical situations and can't seem to help myself or my family...go figure. In my defense, this situation is still by far the hardest of anything I have seen at the hospital in the last 6 months of interning there.
Any thoughts would be appreciated
Thank you.
