Kashley_b
New member
- Joined
- Sep 26, 2022
- Messages
- 1
- Reason
- CALS
- Diagnosis
- 06/2021
- Country
- US
- State
- PA
- City
- Glenside
Hello everyone my name is Ashley, I am here as a caregiver seeking advice for my mother Kimberly and her current ALS diagnosis. Around December 2020 my mother began to experience very mild but unusual symptoms like difficulty swallowing and the months following weakness and coordination issues, on June 17, 2021 she was diagnosed with ALS (aka Lou Gehrig's disease).
My mother is only 55 years old and has declined rapidly since we received her officially diagnosis. Fast forward to present day and my mother is completely bedbound and requires assistance with any and every task from eating to bathing, toileting, you name it. She also now is unable to communicate verbally making it even harder to meet her needs at times. As you can imagine this has impacted our family tremendously mentally, emotionally and financially. My father and I quit our jobs to be full time caregivers to both my mom and brother (who is super independent but also has needs of his own due to physical disability).
With all that said I am here because my mother was gifted a communication device (tobii dynavox) many months ago and she was so motivated and excited to use it when she first got it, and she did well with it in the beginning. However, that has all changed in the last 2-3 months. She seems to be refusing/unwilling to use her device anymore and has been trying to communicate through grunts, cries and screams making caring for her that much more challenging.
My father and I are at a loss on how to be of assistance anymore other than just meeting her basics needs and it's been absolutely horrifying for us all. As she seems to grunt and cry all day long. I am looking for any suggestions or advice from anyone else who may have gone through this or something similar. I have considered that these may be the early stages of dementia but if really hard for doctors to make that determination when they are unable to communicate with her in any way.
We really appreciate any advice we receive even if it's just a kind word of support. I thank anyone and everyone in advance for even taking the time to read this far.
My mother is only 55 years old and has declined rapidly since we received her officially diagnosis. Fast forward to present day and my mother is completely bedbound and requires assistance with any and every task from eating to bathing, toileting, you name it. She also now is unable to communicate verbally making it even harder to meet her needs at times. As you can imagine this has impacted our family tremendously mentally, emotionally and financially. My father and I quit our jobs to be full time caregivers to both my mom and brother (who is super independent but also has needs of his own due to physical disability).
With all that said I am here because my mother was gifted a communication device (tobii dynavox) many months ago and she was so motivated and excited to use it when she first got it, and she did well with it in the beginning. However, that has all changed in the last 2-3 months. She seems to be refusing/unwilling to use her device anymore and has been trying to communicate through grunts, cries and screams making caring for her that much more challenging.
My father and I are at a loss on how to be of assistance anymore other than just meeting her basics needs and it's been absolutely horrifying for us all. As she seems to grunt and cry all day long. I am looking for any suggestions or advice from anyone else who may have gone through this or something similar. I have considered that these may be the early stages of dementia but if really hard for doctors to make that determination when they are unable to communicate with her in any way.
We really appreciate any advice we receive even if it's just a kind word of support. I thank anyone and everyone in advance for even taking the time to read this far.
Last edited by a moderator: