StevieSearching
New member
- Joined
- Feb 23, 2015
- Messages
- 3
- Reason
- CALS
- Diagnosis
- 01/2015
- Country
- US
- State
- ny
- City
- Brookline
Hello All,
This is my first post on this site, I'm not sure how to properly do this but I'm asking for help from anyone willing to share their experiences with my and my family.
In January my family and i found out that my dad has ALS. He's in his mid 60's and has always been a strong, hyperactive, independent, type-A kind of person. My mom and him had just returned from backpacking "The Way" in Spain back in October, and he noticed a few things "off" about himself physically. Fast-forward a few months of testing, back and forth to this doctor and the next... and were told in January that he has ALS. Obviously this was crushing news, his youngest child had just left for college and his new chapter of travels was finally starting.
Within the last month things have progressed very, very quick health-wise for him. He went from a walking, talking, eating, seemingly normal person... to needing a feeding tube, a concussion, oxygen masks, rapid and frightening weight loss, not being able to talk, confusion and hallucinations caused by the other issues ... its terrifying. Just when i think i'm starting to wrap my head around the new reality and adjust to how things are now, it changes in the blink of an eye for the worst.
He's DNR, and this diagnosis and current situation is everything he never wanted for himself. My family is struggling to find a balance in terms of his care, and we are left with so many questions. Are we smothering him? Does he want us around more? How much is too much? What is he trying to tell us he wants? What does he want us to know? Does he know how much we love him?
It's so hard because he's trying to communicate his needs to us and we can all tell how frustrating it is for him. So my question to anyone willing to help is this: What do you wish your caregiver knew? If you are an ALS patient or have experience with this, what do you wish your loved ones and support system knew about everything. What do you want and need from us?
I know this is a loaded question and its asking a lot from people, but any help you could possibly offer would be very much appreciated. I want to do everything i can to make him as happy possible and give him what he needs from us now and just feel so lost and useless. This man gave me the world, and i feel like I can't do anything for him when he needs me the most.
I know there's folks out there that have it worse than us, so maybe this question can help other families as well.
Thank you.
This is my first post on this site, I'm not sure how to properly do this but I'm asking for help from anyone willing to share their experiences with my and my family.
In January my family and i found out that my dad has ALS. He's in his mid 60's and has always been a strong, hyperactive, independent, type-A kind of person. My mom and him had just returned from backpacking "The Way" in Spain back in October, and he noticed a few things "off" about himself physically. Fast-forward a few months of testing, back and forth to this doctor and the next... and were told in January that he has ALS. Obviously this was crushing news, his youngest child had just left for college and his new chapter of travels was finally starting.
Within the last month things have progressed very, very quick health-wise for him. He went from a walking, talking, eating, seemingly normal person... to needing a feeding tube, a concussion, oxygen masks, rapid and frightening weight loss, not being able to talk, confusion and hallucinations caused by the other issues ... its terrifying. Just when i think i'm starting to wrap my head around the new reality and adjust to how things are now, it changes in the blink of an eye for the worst.
He's DNR, and this diagnosis and current situation is everything he never wanted for himself. My family is struggling to find a balance in terms of his care, and we are left with so many questions. Are we smothering him? Does he want us around more? How much is too much? What is he trying to tell us he wants? What does he want us to know? Does he know how much we love him?
It's so hard because he's trying to communicate his needs to us and we can all tell how frustrating it is for him. So my question to anyone willing to help is this: What do you wish your caregiver knew? If you are an ALS patient or have experience with this, what do you wish your loved ones and support system knew about everything. What do you want and need from us?
I know this is a loaded question and its asking a lot from people, but any help you could possibly offer would be very much appreciated. I want to do everything i can to make him as happy possible and give him what he needs from us now and just feel so lost and useless. This man gave me the world, and i feel like I can't do anything for him when he needs me the most.
I know there's folks out there that have it worse than us, so maybe this question can help other families as well.
Thank you.