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nicolettelady

New member
Joined
Jul 24, 2017
Messages
1
Reason
CALS
Diagnosis
07/2017
Country
RS
State
RS
City
Belgrade
Hello all. This is my first visit to this forum and I'm badly need of some caregiver support. I am currently in a foreign country taking care of my aunt who is diagnosed with Motor Neuron Disease and Dimentia. She cannot speak, can barely swallow, and is starting to lose the ability to walk. Her mind is there sometimes, but other times she is practically hysterical and I don't know why or what to do about it. She is unbelievably restless which I think is the worst part because I never get rest. It is hard not to get frustrated sometimes. I have some help from friends/family but that only goes so far. I am the only one physically taking care of her. Any tips on dealing with this terribly awful disease? I am feeling a great burden and I'm at wit's end. Thank you.
 
Welcome Nicolette! Sorry to hear about your aunt's dx. Caregiving is a tough job.

I wonder if it is truly dementia or C02 buildup in the lungs causing confusion? Is your aunt using a bipap machine to help her breathe?

Does she have a feeding tube for nourishment and meds?

These two things are the most helpful things that most ALS patients get.

Again, sorry you and your aunt are going through this. It is a horrible disease.
 
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