Snowman78
Distinguished member
- Joined
- Dec 3, 2013
- Messages
- 158
- Reason
- CALS
- Diagnosis
- 12/2013
- Country
- US
- State
- SC
- City
- Sumter
My dad was actually diagnosed on 12/13/13 and given an educated guess of 4 months of life because of the rate of deteriation at the time. We are now 8 days past the 4 month mark, YAY! I feel like between me, mom the doctors, and home health/hospice we have done a pretty darn good job of taking care of him. His condition took another turn for the worse within the last week. I refer to it as taking another step down. What was his bad days is now his norm and the bad days are that much worse. While he can still move them around he has no real use of his arms anymore, anything he tries to do is an extreme struggle and wears him out quickly. His legs are also going away very quickly now. The newest problem is that he is having a lot of trouble on the potty and can't seem to get it out, which I am guessing means the muscles used for this are going as well. I work a full time job from 2pm-10:30pm and go home on my lunch break to take him to the bathroom in the evening just as I do in the morning before work. Everyday it seems the caregiving gets more and more difficult and intensive and I am scared we came on too strong from the begining and will wear down/out before this fight is over although we give it our best. Mom is not strong enough to maneuver him around, and I stay sore in my back, arms, and legs from lifting him and maneuvering him on and off the potty and in and out of the tub. I find myself tired all the time and at times very excitable and irritable. I know while I make it a point not to sometimes I just snap or say things out of shear frustration that must then apologize for and try to make right and when that happens I feel horrible. I try to never direct anything at him because it is not his fault. I am mad at this horrible disease not him. Most days I am fine, I guess it just builds up inside. Ex: I didn't really realize he was having that much trouble going as he has always(since this all started) been a little obsessed about his BM's and going. Yesterday I took him to potty 5 times which is really hard on me and him and he went a little each time but then demanded a full dose of Miralax before bed and something that simple just had me seeing red. I just couldn't understand why he would up his dose when he had gone so many times yesterday. I guess I just feel like I am losing control of my emotions when I am the glue that has to hold the whole thing together. Is this normal? How do I start/learn to cope better? Feeling overwhelmed and frustrated.