Chrissy62
New member
- Joined
- Mar 30, 2017
- Messages
- 6
- Reason
- Loved one DX
- Diagnosis
- 03/2016
- Country
- US
- State
- Md
- City
- Rockville
My sister was diagnosed about a year ago. We had a family reunion this summer, while she could still communicate yes/no, and her facial expressions helped us read her. Her ALS has taken over her upper region and she can no longer eat, speak, or show facial emotions. She has a feeding tube and may get a tracheotomy.
We are getting together for Easter. I've tried to prepare my kids (17-21) for their aunt's condition. How do we celebrate Easter when my sister can't go to church, or eat a traditional meal? This sounds so superficial, but I truly don't know - we don't want to celebrate with a traditional dinner, as my sister can't join us - she does not like to sit at a table, or try to be part of a conversation.
She can't speak, but also shows no interest in being part of any discussion - we don't know if its because she's not interested, or if she's frustrated she can't speak, or if the ALS has made it difficult for her to even understand or follow a conversation. We don't know what she wants, how she feels, and have no idea how to help her. She is trapped in her shell. I can not imagine what goes through her mind.
I hold it together (usually) in front of her, and try to be cheerful and positive. Then I leave her home and sit in the car and sob. I start to cry in the grocery store, or sitting at a stoplight in the car. I'm so incredibly sad my beautiful sister is deteriorating before our eyes.
How do people manage holidays? Nobody feels like a celebration, but with elderly parents, I want to be sure they have some semblance of Easter with some beauty and hope to it. It could be their last one... and they are despondent watching their daughter living in this shell. I'm open for suggestions.
My kids are old enough not to "need" the traditional holiday, but part of me thinks we should try to carry on normally - I just go round in circles trying to figure out how. This is the new "normal" and I don't know how to live it. Thanks for any advice.
We are getting together for Easter. I've tried to prepare my kids (17-21) for their aunt's condition. How do we celebrate Easter when my sister can't go to church, or eat a traditional meal? This sounds so superficial, but I truly don't know - we don't want to celebrate with a traditional dinner, as my sister can't join us - she does not like to sit at a table, or try to be part of a conversation.
She can't speak, but also shows no interest in being part of any discussion - we don't know if its because she's not interested, or if she's frustrated she can't speak, or if the ALS has made it difficult for her to even understand or follow a conversation. We don't know what she wants, how she feels, and have no idea how to help her. She is trapped in her shell. I can not imagine what goes through her mind.
I hold it together (usually) in front of her, and try to be cheerful and positive. Then I leave her home and sit in the car and sob. I start to cry in the grocery store, or sitting at a stoplight in the car. I'm so incredibly sad my beautiful sister is deteriorating before our eyes.
How do people manage holidays? Nobody feels like a celebration, but with elderly parents, I want to be sure they have some semblance of Easter with some beauty and hope to it. It could be their last one... and they are despondent watching their daughter living in this shell. I'm open for suggestions.
My kids are old enough not to "need" the traditional holiday, but part of me thinks we should try to carry on normally - I just go round in circles trying to figure out how. This is the new "normal" and I don't know how to live it. Thanks for any advice.
Last edited by a moderator: