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ladonnakay1

New member
Joined
Oct 22, 2014
Messages
1
Reason
Loved one DX
Diagnosis
08/2014
Country
US
State
North Carolina
City
Hiddenite
My mother was diagnosed with ALS in August 2014. It has progressed quickly and she is already in a Nursing Home for ventilator patients. In the beginning she was experiencing weakness in her legs. Soon thereafter she was in the hospital with pneumonia, put on ventilator and now she is in a nursing facility. The pneumonia has recurred twice since her diagnosis. I'm seeing a daily decline in her motor skills, especially her legs. I would like for her to come home and I am willing to be her caretaker. She is unable to talk due to the trach. We communicate with lip reading or writing. Is there anyone that can give me useful tips on caring for her so she can live a full life with this devastating disease? My heart goes out to those who are experiencing this disease. I hope and pray there will be a cure for ALS and what causes MND.
 
I am very sorry about your mom. For info on life with a vent look at alsfrombothsides dot com. One of our members is a nurse who has vented for years. Read also threads on this site by Santa Joe ( found mostly in caregivers section) she cared for her husband on a vent. Very different experiences.
Things to consider in bringing her home. Do you work outside the home? Do you have kids? Significant other? Do you have reliable back up? How is your own health? How is your house set up? You can't leave her alone while you go to the store, the doctor, pick up the kids etc. Either you have someone who is willing to learn about the vent stay with her or she goes with you For communication at least look into eyegaze if her hands are gone so she can't type on an ipad or whatever. Also search the web for speakbook if you have not already got it.
You have a lot to handle if you provide a little more info maybe we can answer better. Sounds like your mom is either bulbar or respiratory onset but is now having limb involvement is that right? Again I am very sorry
 
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So sorry for you and your mother. talk to your speach therapist, she helped me to get a type and speak. I still find writing easier.

Prayers,
Janie
 
I recommend asking specific questions and describing specific problems. That way seems to get the most helpful answers.
 
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