Pkmado
Active member
- Joined
- Aug 11, 2012
- Messages
- 49
- Reason
- CALS
- Diagnosis
- 07/2012
- Country
- US
- State
- CT
- City
- Niantic
First of all I love my Pals. He is a wonderful caring person.
Sometimes things just get messed up. We are pretty much able to keep things on an even keel. As ALS progresses new deficiencies occur. I shower, dress and tend to all hygiene for my Pals.
Shaving is a *****. We have tried an electric razor, no good. Other razors no matter how sophisticated don't work well since he only wants to shave once a week. He has a big handle bar mustache which must be shaped . Always doesn't come out right because I am not "holding the razor correctly." Nothing to do with the beard being like super sandpaper because the beard is a week old.
Cooking is the other thing. Phil did all the cooking. Because I never did anything the way he would do it. So I just let him have it. It worked for us. Now I don't mind cooking one bit but I cannot tolerate him standing behind me telling (critically) me everything I am doing wrong (or pretty much not how he would do it.) He is losing his ability to eat. Between the swallowing and not being able to lift his arms to feed himself he barely eats. So this makes it more frustrating that all the time spent and criticism he barely eats anyway. He has not reached the place he needs to be emotionally to allow me to feed him. Or will cough all night but the brand new cough machine sits unused. Not there yet, Really?
I do understand my pals wants to do everything as he always has. He does very often see me as an extension of himself physically. You begin to lose your own sense of self. Same struggle each, with the same power struggle trying to hold onto some sense of self. Are we bucking each other or just ourselves? Both. Unfortunately the nearest Cals only group in almost an hour away which I could manage but it runs until after dark. We are headed soon for much more important and daunting issues so we need to keep our heads over these little things. I also feel constant instructions on how to do everything, cooking in particular is not something I am Able to compromise. The one thing.
Overall we are in a good place considering. Whenever we do have a spat my goal is always to get back to where we were before the spat. His goal is to punish me by not eating or showering or doing our ROM exercises. Or maybe he is just punishing himself for his difficulties. Probably more the latter. The important thing is to get back to working as the functions ALS team we were and need to be. His physical well being depends on it (and my emotional well being) After the holidays we have our Team meet and the PEG needs to be done. Then I will not have to worry about his nutrition. Oh well just a Cals venting. By tomorrow things should be on the mend. (Or he will still be in his pajamas). In the meantime I will be counting his calories missed. Now to try to convince him even though he is angry he has to let me help him dress before I can go to work. A good holiday to all and happy Thanksgiving.
Sometimes things just get messed up. We are pretty much able to keep things on an even keel. As ALS progresses new deficiencies occur. I shower, dress and tend to all hygiene for my Pals.
Shaving is a *****. We have tried an electric razor, no good. Other razors no matter how sophisticated don't work well since he only wants to shave once a week. He has a big handle bar mustache which must be shaped . Always doesn't come out right because I am not "holding the razor correctly." Nothing to do with the beard being like super sandpaper because the beard is a week old.
Cooking is the other thing. Phil did all the cooking. Because I never did anything the way he would do it. So I just let him have it. It worked for us. Now I don't mind cooking one bit but I cannot tolerate him standing behind me telling (critically) me everything I am doing wrong (or pretty much not how he would do it.) He is losing his ability to eat. Between the swallowing and not being able to lift his arms to feed himself he barely eats. So this makes it more frustrating that all the time spent and criticism he barely eats anyway. He has not reached the place he needs to be emotionally to allow me to feed him. Or will cough all night but the brand new cough machine sits unused. Not there yet, Really?
I do understand my pals wants to do everything as he always has. He does very often see me as an extension of himself physically. You begin to lose your own sense of self. Same struggle each, with the same power struggle trying to hold onto some sense of self. Are we bucking each other or just ourselves? Both. Unfortunately the nearest Cals only group in almost an hour away which I could manage but it runs until after dark. We are headed soon for much more important and daunting issues so we need to keep our heads over these little things. I also feel constant instructions on how to do everything, cooking in particular is not something I am Able to compromise. The one thing.
Overall we are in a good place considering. Whenever we do have a spat my goal is always to get back to where we were before the spat. His goal is to punish me by not eating or showering or doing our ROM exercises. Or maybe he is just punishing himself for his difficulties. Probably more the latter. The important thing is to get back to working as the functions ALS team we were and need to be. His physical well being depends on it (and my emotional well being) After the holidays we have our Team meet and the PEG needs to be done. Then I will not have to worry about his nutrition. Oh well just a Cals venting. By tomorrow things should be on the mend. (Or he will still be in his pajamas). In the meantime I will be counting his calories missed. Now to try to convince him even though he is angry he has to let me help him dress before I can go to work. A good holiday to all and happy Thanksgiving.