Jeffreyp
Active member
- Joined
- Aug 14, 2013
- Messages
- 36
- Reason
- Loved one DX
- Diagnosis
- 08/2013
- Country
- US
- State
- MO
- City
- Cape Girardeau
My PALS is bulbar---no speech at all, no use of right arm, limited of left arm and can walk with some assistance. I have hit a wall with what it takes to get her in bed and comfortable sitting. Long before her ALS she had hard time getting comfortable. She spends a lot of time on love seat propped up by 5 pillows and her neck supported by a combination of rolled up hand towels. Sometimes it is green towel that works, sometime green and white, sometimes 2 white-you get the picture. When I say there has to be a better more consistent way her response is I don't understand how her neck hurts. She refuses to try and find an easier more reproducable way. We once looked at lift chair but now she refuses to do that again. For months she was comfortable sitting in a chair with 3 pillows but now she has added a 4th small one that constantly needs adjusting.
Bedtime is a nightmare. She sleeps alone in bed--now on 5th mattress in 8 months. It takes a combination of 3 pillows under hips and legs and hand towel and bean bag neck support to get her comfortable. Since she cannot communicate once in bed except by hand signals ---after ambien she can't type on ipad coherently and i can never follow her hand gestures. The process takes 15-45 minutes to get her comfortable. She insists on literally crawling onto bed and trying to get lined up to plop.
Last night pushed me over the edge. After 90 minutes of trying to get her comfortable i left room to close up the house and get myself ready for bed. I have bed n same room as her bed. I laid down and she moaned to get something for her, no sooner did I get back in bed she moaned agin to swab mouth.I get back in bed again and she moaned to spell out with her finger-GOODNITE.
She refuses to discuss getting home health at night. At some point is it ok for me to just say I can't do anymore to get you comfortable or give her option of hiring a nurse. I have no help from anyone and feel like I am losing my mind. Of course then the guilt gets hold of me. ny thoughts would be much appreciated.
Bedtime is a nightmare. She sleeps alone in bed--now on 5th mattress in 8 months. It takes a combination of 3 pillows under hips and legs and hand towel and bean bag neck support to get her comfortable. Since she cannot communicate once in bed except by hand signals ---after ambien she can't type on ipad coherently and i can never follow her hand gestures. The process takes 15-45 minutes to get her comfortable. She insists on literally crawling onto bed and trying to get lined up to plop.
Last night pushed me over the edge. After 90 minutes of trying to get her comfortable i left room to close up the house and get myself ready for bed. I have bed n same room as her bed. I laid down and she moaned to get something for her, no sooner did I get back in bed she moaned agin to swab mouth.I get back in bed again and she moaned to spell out with her finger-GOODNITE.
She refuses to discuss getting home health at night. At some point is it ok for me to just say I can't do anymore to get you comfortable or give her option of hiring a nurse. I have no help from anyone and feel like I am losing my mind. Of course then the guilt gets hold of me. ny thoughts would be much appreciated.