mrich96
New member
- Joined
- May 22, 2016
- Messages
- 2
- Reason
- CALS
- Diagnosis
- 04/2015
- Country
- US
- State
- North Carolina
- City
- Asheboro
Does anyone else struggling with answering this question? Whether it be your mom, dad, husband, brother, sister, etc.?
This may seem like a strange post but I have been struggling with this lately. I have a wonderful support system with family, church family, and friends, who genuinely care about our situation, but this question is hard for me. Most of the time I answer with "She's in good spirits" or "She's always smiling" mainly because I feel like that's what they really want to hear. They really don't want to hear the truth. They don't really understand the truth about this awful disease. They don't want to hear that she aspirated twice that day, or that it took me 10 minutes to understand that she wanted me to uncover her feet, or that she's lost 50 pounds because she has trouble swallowing and refuses a feeding tube. But in all honesty, she is slowly dying, right in front of us and there is absolutely nothing we can do about it.
But...I'll keep smiling and telling them what they want to hear, because they won't understand and that's ok.
"For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts."
Isaiah 55:8-9
This may seem like a strange post but I have been struggling with this lately. I have a wonderful support system with family, church family, and friends, who genuinely care about our situation, but this question is hard for me. Most of the time I answer with "She's in good spirits" or "She's always smiling" mainly because I feel like that's what they really want to hear. They really don't want to hear the truth. They don't really understand the truth about this awful disease. They don't want to hear that she aspirated twice that day, or that it took me 10 minutes to understand that she wanted me to uncover her feet, or that she's lost 50 pounds because she has trouble swallowing and refuses a feeding tube. But in all honesty, she is slowly dying, right in front of us and there is absolutely nothing we can do about it.
But...I'll keep smiling and telling them what they want to hear, because they won't understand and that's ok.
"For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts."
Isaiah 55:8-9