ash2012
New member
- Joined
- Aug 26, 2019
- Messages
- 4
- Reason
- Loved one DX
- Diagnosis
- 10/2018
- Country
- US
- State
- NC
- City
- Asheville
Almost a year ago, my dad was officially diagnosed with ALS. He showed atypical symptoms for a year up to that point (it presented more like Parkinson's disease), which is why the doctors weren't comfortable calling it ALS until they truly ruled out every other possibility. And as I'm sure many of you know, that process can take quite some time and is exhausting in itself.
My dad is 63 years old, and I'm just shy of 30 years old. I relocated to my home state just months before his diagnosis (the universe provides) because I was ready for a change of pace in my own life. I now live two hours away from my parents, which has turned out to be a bigger blessing than I could have anticipated. I work remotely and have the flexibility to travel whenever I'd like, so I drive home once a month and spend approximately a week at a time at home with my dad, my mom and our family dog. (My brother lives just 30 minutes away from them, works for the family business and visits frequently).
As I complete my first year back in my home state, I'm observing how we've fallen into this comfortable visiting routine where I help clean, cook and just try to be a force of positive energy in the house. But I'm feeling more and more uneasy as my dad's condition gradually progresses. The part I'm playing just doesn't seem like enough. My mom sounds exhausted and depleted all the time, both on the phone and during my visits. Talking makes my dad really tired, so we can't have deeper conversations when I'm home and we barely speak on the phone anymore. He's progressing gradually. They have yet to bring nursing staff into their home to help take care of his hygiene needs, but I think that's only a matter of time.
It just feels like we find a way to manage what it currently is and then just wait for it to get worse. We also don't openly talk about what it will mean as things get worse (hello, compartmentalization). So I feel stuck. And nervous. And so impossibly sad for both of them that this disease is now eating up every bit of their time, energy and existence.
I'd love to connect with anyone else here feeling similarly or who has been in my shoes and can offer advice, support, anything. I appreciate you reading this — it's my first forum post.
My dad is 63 years old, and I'm just shy of 30 years old. I relocated to my home state just months before his diagnosis (the universe provides) because I was ready for a change of pace in my own life. I now live two hours away from my parents, which has turned out to be a bigger blessing than I could have anticipated. I work remotely and have the flexibility to travel whenever I'd like, so I drive home once a month and spend approximately a week at a time at home with my dad, my mom and our family dog. (My brother lives just 30 minutes away from them, works for the family business and visits frequently).
As I complete my first year back in my home state, I'm observing how we've fallen into this comfortable visiting routine where I help clean, cook and just try to be a force of positive energy in the house. But I'm feeling more and more uneasy as my dad's condition gradually progresses. The part I'm playing just doesn't seem like enough. My mom sounds exhausted and depleted all the time, both on the phone and during my visits. Talking makes my dad really tired, so we can't have deeper conversations when I'm home and we barely speak on the phone anymore. He's progressing gradually. They have yet to bring nursing staff into their home to help take care of his hygiene needs, but I think that's only a matter of time.
It just feels like we find a way to manage what it currently is and then just wait for it to get worse. We also don't openly talk about what it will mean as things get worse (hello, compartmentalization). So I feel stuck. And nervous. And so impossibly sad for both of them that this disease is now eating up every bit of their time, energy and existence.
I'd love to connect with anyone else here feeling similarly or who has been in my shoes and can offer advice, support, anything. I appreciate you reading this — it's my first forum post.