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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.
 
I know exactly what you are going thru. It seems like my husband takes out all of his frustrations on me. Most of the time I let it roll off my back but sometimes it is unbearable. I am his sole caregiver and am trying to do the best I can. As for shaving, good luck with that. My husband has a beard that I try to trim. The last time I did that he banned me from the beard trimmer. Funny thing is our son came over and did a worse job than what I did. We got a good laugh out of that one.

I try to think of all that he is going thru and am heartbroken. He is bedridden - will not wear a depends. He does have a peg and I give him a little something to eat once a day. He is on a vent and his once positive attitude is quickly going. Hang in there. We all understand.
 
Oh my, you have hit a place I can SO identify with everything you said!

Sadly the further my PALS progresses on these same fronts the more angry and unreasonable he is becoming and it's the loss of that person he was the is the hardest for me to watch.

hugs
 
yes I know also. the constant micromanaging is the worst I think. I don't need him to think for me. I am an grown woman for goodness sake and raised 4 kids!

I has been suggested to me that since he can not control ALS, he tries to control everything around him--and a cals/spouse get the brunt of it. is your husband on neudexta or an anti depressant? my husband had mild emotional liability (nothing like what some people go thru here) and after he started taking neudexta, his old sweeter and milder personality came back (not completely but things were better). Even he saw it after it got better--

I dont' have any advise for you--my husband doesn't "punish" me by non compliance, but he has chased me around the house in his PWC trying to run me over! The only thing I can suggest is that you make sure you make time for yourself and your own emotional needs. That is soo important. If you feel more relaxed, you will be a better caregiver and not feel so irritated and defensive. I try to get out about once a month for the evening with friends and go to a yoga class one night a week. Early when my husband was not as advanced, I did go out to dinner with girlfriends once a week.

PS--beards and mustaches are much worse than shaving legs! I hate it!
 
Wow.. I can totally identify with all that, including the mustache! I try to cope with the micromanagement too, but it doesn't always work.... I blow up from time to time; sometimes I joke about it. I go for yoga once a week. And going to work helps too.
 
My PALS praises my micro-management skills one day, then goes off his head about the same skills the next day.

Their frustration must be so awful to try and manage inside, I can never truly imagine it even living with it as a CALS.

I'm nearly giving up however on trying to keep things on some kind of an even level, he feels he is in his rights to use me as his target, so I'm trying to just toughen up and put my energy into other things.
 
what a crappy disease, but it is good to know you are not alone and not crazy!

love to you all!
 
Not so sure I'm not crazy Barbie, but at least I'm not alone :lol:

Tillie (and yeah it's time to trim that beard again ugh)
 
I am getting pretty good at shaving Tim. I found it easiest in the shower, as his whiskers are softer, and I can readily rinse the blade. Initially Tim told me that I was going too lightly, and he coached me on how to shave next to his beard and mustache. Only nicked him once, and I figure it is good practice for when plucking my occasional whisker won't work anymore.
 
Are you talking about a man's face or a woman's?
 
Wow, I hope that I never take this disease out on the one's that I love the most, you are all angels, God Bless
 
zoohouse the nair comment confused me a bit too, come on Afraid&Alone can you explain where you think the nair is going to help?
 
The coiled cord on Tim's ceiling lift acts like an epilator when rolled across his skin, haven't tried it on his face though.
 
Wow, I hope that I never take this disease out on the one's that I love the most, you are all angels, God Bless

Have you read some of my comments? I think I am more devil than angel at times.
 
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