Mom in denial

[csabados]

Mom was diagnosed a couple days ago. She is in denial and doesn't want to tell anyone. I was with her and I have been a total wreck. I had to tell someone. There is a order of need to know and I have since told my brothers, her brother and my kids. She has another appointment with her main neurologist this week. We will know more then. I know she needs time to process. I am hoping we will get more information on any treatments or such. I have been reading trying to get some info but sometimes that is too much info. I know very little. I know it affects each one differently. Hers has been her voice and swallowing. I think she has been having symptoms for a couple years.

 

[Atsugi]

Sorry to hear about your mom. Some people cope differently. Some go into denial first, before the sadness sets in.

If you haven't done it already, I routinely recommend getting a second opinion. That may help overcome the denial, and it will certainly give you both more information.

 

[MaxEidswick]

>I routinely recommend getting a second opinion.

this is important suggestion ... try http://ri.search.yahoo.com/_ylt=A0LEV122JmlTpxcA.NRXNyoA;_ylu=X3oDMTEzZDEzaXYwBHNlYwNzcgRwb3MDNARjb2xvA2JmMQR2dGlkA1NNRTM0M18x/RV=2/RE=1399428919/RO=10/RU=http%3a%2f%2fwww.medicinenet.com%2famyotrophic_lateral_sclerosis%2fmedford-or_city.htm/RK=0/RS=5QMTpk.xvE1P6fMvWywlLpGcXL0-

I was born and raised n Ashland/Medford, really miss it!

Max

 

[GregK]

I was born and raised n Ashland/Medford, really miss it!

At the risk of hijacking this thread: I was raised (mostly) in the Dallas/Salem/Sheridan area. And, except for the rain and clouds, I miss it too!

Back on track...
This is too important of an issue to NOT have a second opinion.
From my (admittedly limited) experience, any Doctor considering this diagnosis will desperately want a second opinion, even if it's to CYA.

 

[Barbie]

give her and yourself some time to process what is happening. If she is in denial it will not hurt anything--nothing is going to happen overnight.

This is all very overwhelming for all of you. go to the next doc appt., get a referral for an ALS clinic and get a second opinion. contact the ALS association and ask for a home visit. the ALS clinic may be more helpful than her regular neuro.

We will all be here to help you in anyway we can.

 

[barneyswife]

Definitely get the second opinion. We ended up with three and unfortunately they were all the same! With any luck your mothers will be different.
Crossing fingers and toes for all of you.
Hugs
Linda

 

[Dusty7]

Denial... Anger... Bargaining... Depression... Acceptance
It can be a long road... some manage to bypass a stop or two... but eventually we get to our destination
Your mom will, too.

 

[lgelb]

Assuming she gets only confirmatory opinions and at some point has to come out from denial, after that process you may want to turn the conversation (perhaps with multiple family members there to reinforce that you guys are going to be there for her) to "knowing that this disability will probably get worse, what is most important to you about where and how you live?" Sometimes we focus on what is going to be lost, but that becomes all too readily apparent. Draw a bead from the beginning on what independent decisions she can make about her future and how your family will ensure those are honored.