zboy2854
New member
- Joined
- Sep 14, 2008
- Messages
- 7
- Reason
- Other
- Country
- US
- State
- TX
- City
- Fort Worth
Hi all,
My mother has what 3 neurologists have suggested is ALS. We haven't had actual EMG tests or other definitive diagnosis, but at this point it seems that there aren't any other things it could be.
About a year ago she started having trouble walking, was tripping/falling, etc. Had knee replacement thinking it was a knee problem, but never recovered from the surgery and rehab wasn't working. Whatever ability she had left to walk or get up out of a chair on her own has long since gone.
About 6 months ago she started progressively losing the use of her arms and hands, and over the past couple of months she has been progressively losing her speech. Her arms are now useless, and every week gets more and more difficult for her to speak or to understand her.
She can still chew, swallow and breathe on her own at this point, but that's about it. Everything else she needs help with.
Fortunately she has a long term care policy, which has allowed her to have aids assisting her in her home 24/7, which has taken a lot of pressure off of me, as an only child and the only person left as a relative. But the aids are getting burned out, not to mention physically exhausted/injured, as my mom is heavy set, and is difficult to move in and out of bed, in and out of the wheelchair, on and off the commode, etc.
To make things worse, my mom tends to be a very harsh and negative person, and so it is also burning out the aids emotionally as well.
She has a living will and has told me she doesn't want to be kept alive artificially (i.e. feeding tube, respirator, etc.).
Right now I'm feeling completely lost as to what to do next. My mom is obviously getting progressively worse, and I don't know what the next step is. As the person who is and will be responsible for my mom and directing her care, I have so many questions, and no idea where to start or what I should be doing now. For instance:
What happens if we can't get aids to come to the house anymore, because it's too hard to move her or deal with her?
How do I communicate with her if and when she completely loses all speech or oral function?
At what point can she no longer be at home and need to be put into hospice or "official" care?
Thanks everyone for listening. Any words of advice or knowledge is greatly appreciated, as I feel like I'm drowning right now.
My mother has what 3 neurologists have suggested is ALS. We haven't had actual EMG tests or other definitive diagnosis, but at this point it seems that there aren't any other things it could be.
About a year ago she started having trouble walking, was tripping/falling, etc. Had knee replacement thinking it was a knee problem, but never recovered from the surgery and rehab wasn't working. Whatever ability she had left to walk or get up out of a chair on her own has long since gone.
About 6 months ago she started progressively losing the use of her arms and hands, and over the past couple of months she has been progressively losing her speech. Her arms are now useless, and every week gets more and more difficult for her to speak or to understand her.
She can still chew, swallow and breathe on her own at this point, but that's about it. Everything else she needs help with.
Fortunately she has a long term care policy, which has allowed her to have aids assisting her in her home 24/7, which has taken a lot of pressure off of me, as an only child and the only person left as a relative. But the aids are getting burned out, not to mention physically exhausted/injured, as my mom is heavy set, and is difficult to move in and out of bed, in and out of the wheelchair, on and off the commode, etc.
To make things worse, my mom tends to be a very harsh and negative person, and so it is also burning out the aids emotionally as well.
She has a living will and has told me she doesn't want to be kept alive artificially (i.e. feeding tube, respirator, etc.).
Right now I'm feeling completely lost as to what to do next. My mom is obviously getting progressively worse, and I don't know what the next step is. As the person who is and will be responsible for my mom and directing her care, I have so many questions, and no idea where to start or what I should be doing now. For instance:
What happens if we can't get aids to come to the house anymore, because it's too hard to move her or deal with her?
How do I communicate with her if and when she completely loses all speech or oral function?
At what point can she no longer be at home and need to be put into hospice or "official" care?
Thanks everyone for listening. Any words of advice or knowledge is greatly appreciated, as I feel like I'm drowning right now.