Palmbeach
New member
- Joined
- Oct 2, 2009
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 05/2007
- Country
- Uni
- State
- Ohio
- City
- Middleburg Heights
My husband is 66 years old and was diagnosed 2-1/2 years ago. He can no longer use his hands or arms, can not swallow or speak. He can move his legs but cannot stand. Most of the time they are stiff or he has spasms in his feet. I get him up three times a day and he is in his wheelchair for 2 hour periods each time. He has a peg tube since last June. He had never been sick in his life previous to this. My problem is I am getting worn out physically even though I have nursing help at night (it started 2 months ago.) He calls me when he is in bed and chair constantly every 20-45 minutes for re-positioning, suctioning, wiping his face and eyes etc. This occurs at night also but then he usually calls in 1-1/2 to 2 hour intervals. I try to put myself in his place and do understand how horrible it is not to be able to even scratch you own nose if needed but I sometimes think he is just calling to me to make sure I can hear him or that I am close by. Lifting him and transfering him has become very difficult for me. I am 62 years old and had breast cancer 7 years ago. Major surgery which left my arms and chest muscles weak. I want to do everything I can for him but I am getting to the point that some days I cry for him and some days I cry for me. Then guilt sets in and it is an emotional roller coaster. He does not want me to go out at all. When I have to, he tells me hurry up and get back. How do all of you cope with this and is this common in this disease to be so demanding with no break? Sometimes when he lays down, I ask him to just give me 45 minutes without calling me and let me rest but he can't do it. I have tried explaining to him that I must stay healthy to care for him but it doesn't seem to matter. Any information would be helpful. We have tried several meds to help him relax but nothing seems to work. Bev