When Things Progress-How do you communicate?

[rickmcmahan]

My wife and I were discussing this subject last night. We do not know how we will handle this if the road takes us to this point. Here is the concern.

I can no longer speak. My right arm and leg are very weak. What if down the road I loose 100% use of both of my arms/hands. Lets say I am in the bed at night. I need to use the bathroom. How can I alert my wife to my needs? How do you wake you caregiver up if you cannot speak or use your arms and hands? Yes I know about the use of a AAC communication device. I have one. But at night it is not turned on or not accessable . How can it be of help? I know that I am not at this point of my progression, but I think about this stuff every day. How can I help my family prepare for this possibility?

Any help will be great. Thanks.

Rick

 

[liz]

Rick -

Thank you for raising these difficult questions - why i have kept focusing on questions at home on things like who is going to wipe my (delicate) a--? Our (not just my) dignity is the issue and I continuously read this forum for ideas old and new. The road is going to take us all to that point.

Rick - are you at that point or just preparing? I'm trying to stay "one step ahead" so looking forward to other response.

Liz

 

[rickmcmahan]

No I am not at that point . But who knows where I will be down the road. I just worry about things that are going to be dificult to handle and I need any help yall can give us. Thanks.

Rick

 

[quadbliss]

Rick,

I am paralyzed from the neck down and can't speak. when I am in bed, I get my wife's attention by clicking. I pull a vacuum between my tongue and the roof of my mouth to make the sound. she then reads my lips. When we get to a word she
can't get, I try three times. If she still doesn't get it, I
say "spell". Then I begin spelling the word using the military
words... alpha, bravo, Charlie, etc. It takes a little bit to
memorize the words, but it is well worth it. I have included them
below in case anyone thinks they might help.:-D

SPELL

A .......... ALPHA N .......... NOVEMBER
B .......... BRAVO O .......... OSCAR
C .......... CHARLIE P .......... PAPA
D .......... DELTA Q .......... QUEBEC
E .......... ECHO R .......... ROMEO
F .......... FOXTROT S .......... SIERRA
G .......... GOLF T .......... TANGO
H .......... HOTEL U .......... UNIFORM
I .......... INDIA V .......... VICTOR
J .......... JULIET W .......... WHISKY
K .......... KILO X .......... X-RAY
L .......... LIMA Y .......... YANKEE
M .......... MIKE Z .......... ZULU

Mike

 

[quadbliss]

Liz,

I am not my body. I am my mind and spirit. I am paralyzed from the
neck down, need help to go to the bathroom, and can't speak. In spite
of this, I have not lost one ounce of my dignity. No one can take
that away from you. You have to surrender it. I have pride in who I
have become, and exist with an ere of confidence.

Mike