eyecewe
New member
- Joined
- Feb 24, 2020
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 11/2019
- Country
- US
- State
- PA
- City
- Philadelphia
My dad was recently diagnosed with ALS last November (first stage), and I am devastated. I live in an apartment about 45 minutes away from my parents house, but I go to visit them at least 3x a month and call/text several times a week. We are very close. When my parents first told my brother and I, I didn’t know how to react so I just asked a lot of questions and did a lot of research. I was too stunned and still am. I can’t imagine what my dad is going through. It is very depressing to think that one day (and very soon) he will be gone. I don’t know how to feel about it, other than hopeless and depressed. Whenever I go over the house now, I don’t know how to act around him. I don’t want to treat him like a patient, but I don’t know how to act without breaking down and crying. I don’t want him to see my emotions because I don’t want him to hurt thinking that I’m hurting. He loves to paint and draw, and lately I’ve noticed that his hands are getting weaker so he can’t do it as much or as involved as before. This breaks my heart. I don’t know how to communicate to both my parents that I am really hurting without making them sad.
I’m not sure what I’m looking for here. I think I need advice on how to cope. There’s a lot of tips for caregivers, but I am looking for stories of hope and personal experiences with people who have a parent with ALS.
I’m not sure what I’m looking for here. I think I need advice on how to cope. There’s a lot of tips for caregivers, but I am looking for stories of hope and personal experiences with people who have a parent with ALS.