Mojoloco
Active member
- Joined
- May 12, 2015
- Messages
- 35
- Reason
- Lost a loved one
- Diagnosis
- 01/2013
- Country
- US
- State
- Minnesota
- City
- Anoka
Hello- I am new at posting but I have been following along for quite some time. My wife was diagnosed two and a half years ago so I have had the same ups and downs all of us caregivers have had. So far I have been holding my own but today has been a turning point. She is now on home hospice care and no longer seeking treatment.
Today was going to be our last outing, an overnight stay in Wisconsin at my nephews wedding. We were both looking forward to it so much. A friend came over and did a makeover for her. She was beautiful. All week we were working on pain control. She has limb onset and is a quad - no movement from the neck down. Her speech and swallowing is good, but her breathing is becoming compromised. Because of her immobility her back and joints have become quite sore. The last two days we doubled her morphine intake in anticipation of this trip but it was not enough. We returned home After traveling halfway there because the pain of being in the wheelchair was too much.
I have not posted until today because I have been focusing on her needs, not mine.
However today was like the day she was diagnosed because the finality of ALS once again kicked us in the butt. I have tried so hard to tweek things for her to travel but it didn't work. I will keep trying. I was so hoping that she would see extended family one more time.
I feel that I am on my own because she wants to insulate herself in our home and be comfortable in her cocoon. I get that but I need others to help me. I haven't worked(as a carpenter). for a year and a half because she can no longer move.
I have seen the compassion of everyone here and feel that only you folks really know how I feel, even though I am new. ALS is not new to us and I think that we have been successful at keeping ahead of the monster. Your stories have inspired me and I will try to help others the way you good folks have. Thank you. Mojo
Today was going to be our last outing, an overnight stay in Wisconsin at my nephews wedding. We were both looking forward to it so much. A friend came over and did a makeover for her. She was beautiful. All week we were working on pain control. She has limb onset and is a quad - no movement from the neck down. Her speech and swallowing is good, but her breathing is becoming compromised. Because of her immobility her back and joints have become quite sore. The last two days we doubled her morphine intake in anticipation of this trip but it was not enough. We returned home After traveling halfway there because the pain of being in the wheelchair was too much.
I have not posted until today because I have been focusing on her needs, not mine.
However today was like the day she was diagnosed because the finality of ALS once again kicked us in the butt. I have tried so hard to tweek things for her to travel but it didn't work. I will keep trying. I was so hoping that she would see extended family one more time.
I feel that I am on my own because she wants to insulate herself in our home and be comfortable in her cocoon. I get that but I need others to help me. I haven't worked(as a carpenter). for a year and a half because she can no longer move.
I have seen the compassion of everyone here and feel that only you folks really know how I feel, even though I am new. ALS is not new to us and I think that we have been successful at keeping ahead of the monster. Your stories have inspired me and I will try to help others the way you good folks have. Thank you. Mojo