I don't know what to do anymore!

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brooksea

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My husband gets up early and stays up late. That would be fine if we were "normal" and didn't have a kid.

I think I'm putting him to bed, but no, he wants this gadget or that to mess around with on the computer (which is very difficult for him and he needs my assistance). I have to move all of his stuff to the bedroom, get him positioned in bed. I think he's just going to listen to a book on the computer, but, no, he wants to stay up. He has no concept of time and never has. He just doesn't seem to care now.

I tried to explain to him that he needs to go to sleep, as our son will inevitably get up and ask for me. Son said he is lacking my attention and told me so. I told my husband I can't cater to him and our son at the same time.

He asked me, "Why don't you just go to bed yourself?" (who will take care of BiPap, positioning, medication, etc...?)

Yes, I can sleep through the Audible book you are blasting throughout the house without head phones and yes our son won't get up and ask for a second hug and good night kiss. Yes, I'll get right in bed.

I was gonna say I was sorry if I offended anyone, but I'm not sorry. My husband is becoming an ass. There, I said it.

Y'all kill me if you want . I might be mighty grateful.
 
Good for you, CJ! I'll admit it, too. My husband acts like an ass sometimes, too! I am tired, tired all of the time. I am ashamed of how neglected my son is. I just don't know how to balance it all.
 
CJ- what would happen if you WOULD go to bed- (i know you probably wont sleep) in another room? Give him one night where you dont cater to him. Dont reposition him. Dont give him his gadgets. Just take care of your son. Would that show him that he actually needs you? I dont know. Just a suggestion.
 
Been there, done that. He can still walk, albeit, precariously. So, he just gets up and gets me. So, all that positioning and equipment stuff has to be done all over again. So, I just stay up. Once I'm awakened, I can't go back to sleep. I can't help it.

And then, I would like some time to myself. Is that too much to ask? Really, is it? I want to know.
 
Strap his butt to the bed and have some you time that you so very clearly deserve.
Gag him if you have to...:)
 
CJ, thank you for your post. At least once a week I am saying, 'he's such an ass'. It frustrates me, beyond belief, that he is totally ok w/ me neglecting our three little boys when he 'needs' a drink, channel changed, etc. Lately, I've been questioning if he has some FTD bc he can be so unreasonable and when I, even politely, call him on it he smirks or laughs. Who does that?

He often needs to take extra meds to help him have a BM. more often then not he will requesting the regiment soon before the PCA has to leave. I don't mind helping him when he goes however it would be a lot easier on all of us if he had the regiment earlier in the day.

Idk. I hesitate to post such frustrations. But now I won't, knowing others are truly in the same boat. Those who may be offended, well, I guess you just don't get it.
 
epkennedy- dont know your story, but the smirking and laughing may and i say MAY be emotional lability. just wanted to throw that in there in case you hadnt heard of it. not trying to make excuses for your "ass"- LOL.
Best of luck to you.
 
Never heard of that. Is it related to FTD?
 
Hi, we too have those 'before settling to bed' episodes. No matter how organised I am, and how much I strive to put all in place so that we can enter the bedroom, I can help L onto the bed, put his mask on, and maybe read for 15 mins before going to sleep - it rarely happens.

Ok, it is not as 'extreme' as in the case of your husband CJ, but there is always another thing to tend to, another demand, another comment, another question etc. If I ask about comfort of the mask, or comfort in the bed the answer is either not clear (he is not sure) or things are not right.

I lost my patience last night and after some shouting tried to get to the bottom of this. I was told that he is worried things will go wrong in the middle of the night, that he may die if his mask comes off - all of which I understand, but endless fidgeting and constant demands will not necessarily change anything. We had a chat over breakfast today and decided to agree and both try to stick to a strict routine once we enter the bedroom (ooh la la :)). I often just need to wind down, not talk, and certainly not embark on many uplanned tasks.

CJ, I don't know your husband but over the years of following your posts have some kind of mental image of him (I feel he is stubborn but can also be a bit of a charmer). I know it is tough, but also know you guys hang in there and keep going, somehow. Although my son is younger than yours I can relate what you say about him needing you.

Take care, Dani
 
God bless all you wonderful women! You are all saints for putting up with and going through all you do. I couldn't help but think of that "children's" book. "Go the F**k to Sleep" We soooooo relate to it in our house, maybe we need to rewrite it a PALS version of it :)

Sorry if the language offends anyone, I find it utterly hilarious...

Google: "go the f to sleep full text" - the second result at slideshare shows the full version of it.
 
Let me say, as a PALS, I can see how stressful, frustrating, maddening being a Caretaker can be and that you're at the end of your rope quite frequently. You seriously have my utmost respect and admiration. I, so far, am a model PALS. ;) I know it's hard on you.
God's blessings, comfort and strength for you. You are all Angels on earth.
Love,
Marta
 
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Well at my house I am the one with ALS if I try to sleep in bed about two hours is all I can sleep without being moved so I now sleep in my lift chair with my BiPAP machine I sleep all night. We use the cushion out of my wheelchair so far no sores I have been doing this for some time. I use one of those round travel pillows it snaps under my chin that way my head doesn't move. Also we have baby monitors that way he can hear me. I insist on him going out for coffee every morning he sets up my computer then I can operate my cell phone and change channels on the TV.
 
Cj I am sorry for you and the others that are going through these trials with small kids. Mine are grown, so I don't have this problem..Love you hon:) Now the smiling and smirking I totally get, Bruce does that. The other night he said he was playing with Bama, but he was hurting him, and when I called him out on it, he smiled and smirked this evil little grin. Pissed me off. I really think his mind is definately not the same.
 
Can totally relate, Joni! :-/

Caldona- there is an obvious difference between men & women PALS for sure! ;)
 
I got this kind of problem with my wife when things went really bad. Someone explained to me it is usual with this disease. When you are not able to do anything by yourself, you have to “manipulate”’ other to do what you want. Soon, you are asking for more and more. Your husband is not becoming an ass, he is (all your family is) in a terribly difficult situation and he is trying to cope with it (all your family is).
You have to put limits or, eventually, you will be completely overwhelmed. Being a spouse and a caregiver is not helping on that matter. I understood that only when a nurse pointed out to me it was not normal I was not able to sleep more than 15mn in a row or I had to move the blanket 20 times in the last 10mn. When you are in the routine, you can not really see what is wrong in that.
You will feel bad to put limits but it is necessary for you, your kids and your husband. It helps to have someone with you to see where are the proper limits.
To get time for yourself, you also need help: Someone to take care of your husband when you are OUT doing something you like. And no, it is not too much to ask. Obviously, it will be good for you but it will also be good for your husband to see someone else can take care of him.
 
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