Prohobo
Member
- Joined
- Mar 9, 2015
- Messages
- 18
- Reason
- Loved one DX
- Diagnosis
- 03/2015
- Country
- US
- State
- FL
- City
- Sarasota
I am in an awkward situation and I really don't know what to do.
I am the POA for my mother, who at this point can NOT speak and barely moves.
In October 2014 my mother's speech slurred and she had a funny gait (walk) - she had previously been dancing and swimming - so this was rather concerning.
By March of 2015 we have seen 3 neurologist on this rather bumpy road of diagnosis and frustration.
The latest neurologist - which I saw with my mother last week (Thursday) for the very first time had me step out of the room to "fill out some paperwork" as an excuse to tell me he thought my mother had ALS. I said are you sure - we saw two previous Neurologist that said they couldn't find anything and one subscribed her Keppra and to get some physical therapy. He said he was fairly sure - not only has he diagnosed it before, he has a brother-in-law that has it who he has treated and helped.
He spoke with the previous neurologist and they both agree it is ALS. However, the new doctor doesn't want to break the news to my mother because he doesn't really have a rapport with her. The other neurologist said he would - since he has seen her several times and has a rapport with her. Unfortunately he is over an hour away and I have NO way of getting her there - because her condition has deteriorated so quickly.
That was Friday - now it is Monday and I am in limbo.
I am the only one that knows what is going on - my mother asks me if I have heard back from the doctors and what is the treatment - she thinks she will get better. My sister lives in hope that this (whatever it is) is curable.
My mother is in skilled nursing (transported from the hospital) because she can't move too well (can't talk or walk) - she is losing weight rapidly. We communicate through her ever worsening horrible writing.
I use to be able to face her with a smile on my face, joke and laugh - as I too was living in hope that we would have a diagnosis soon and that this would just be another chapter in our lives. However - as I know now - I can barely look at her without breaking down.
The new doctor said he WOULD if there was no one else, but he is on-call at the hospital all this week.
ALS is horrible - now I am in an awkward position.... :-?
What to do?
I haven't even mentioned that her mother (my grandmother) is still alive (99 years old) and since my mother can't visit my grandmother thinks she is dead and I am lying to her, which I am her POA and Health surrogate. My mothers boy-friend is going into open-heart surgery, who had no other family which I am also the POA and health surrogate for.
While I am not a religious man, I sure do feel like Job.
I am the POA for my mother, who at this point can NOT speak and barely moves.
In October 2014 my mother's speech slurred and she had a funny gait (walk) - she had previously been dancing and swimming - so this was rather concerning.
By March of 2015 we have seen 3 neurologist on this rather bumpy road of diagnosis and frustration.
The latest neurologist - which I saw with my mother last week (Thursday) for the very first time had me step out of the room to "fill out some paperwork" as an excuse to tell me he thought my mother had ALS. I said are you sure - we saw two previous Neurologist that said they couldn't find anything and one subscribed her Keppra and to get some physical therapy. He said he was fairly sure - not only has he diagnosed it before, he has a brother-in-law that has it who he has treated and helped.
He spoke with the previous neurologist and they both agree it is ALS. However, the new doctor doesn't want to break the news to my mother because he doesn't really have a rapport with her. The other neurologist said he would - since he has seen her several times and has a rapport with her. Unfortunately he is over an hour away and I have NO way of getting her there - because her condition has deteriorated so quickly.
That was Friday - now it is Monday and I am in limbo.
I am the only one that knows what is going on - my mother asks me if I have heard back from the doctors and what is the treatment - she thinks she will get better. My sister lives in hope that this (whatever it is) is curable.
My mother is in skilled nursing (transported from the hospital) because she can't move too well (can't talk or walk) - she is losing weight rapidly. We communicate through her ever worsening horrible writing.
I use to be able to face her with a smile on my face, joke and laugh - as I too was living in hope that we would have a diagnosis soon and that this would just be another chapter in our lives. However - as I know now - I can barely look at her without breaking down.
The new doctor said he WOULD if there was no one else, but he is on-call at the hospital all this week.
ALS is horrible - now I am in an awkward position.... :-?
What to do?
I haven't even mentioned that her mother (my grandmother) is still alive (99 years old) and since my mother can't visit my grandmother thinks she is dead and I am lying to her, which I am her POA and Health surrogate. My mothers boy-friend is going into open-heart surgery, who had no other family which I am also the POA and health surrogate for.
While I am not a religious man, I sure do feel like Job.