A tough week so far...

[Barbie]

It has been a tough week emotionally for me...while hubby is slowly declining, he is declining even though he denies it. He has been very tired lately, and looks thin and weak. He has been pretty regular in the poo department for several months, but was constipated this week. what a struggle! He had not gone for 3 days, so I gave him an enema. then another. then he demanded another. against my better judgment I did it. even though he was pale and sweating and moaning. good grief. He was still trying to control everything and I could do nothing right. I finally demanded that we get him off the pot before he collapsed. It took three of us to do it ... He was pasty white and sweating for a long time afterwards, and so weak all he could do was sit in his chair with his eyes closed all evening. very scarey and he is soooooooo bossy when he gets scared. he tries to yell at me but it comes out a weak squeal and I can't make it out and then he gets more and more upset that I am not doing what he wants how he wants and when he wants. Apparently I can raise 4 kids and run a business but I can't take care of him corrrectly...

Then yesterday, my son was being rude (as usual lately) to him and me. I was trying to cook dinner and getting irritated at him. hubby comes in and asks me about my day. all ok so far...I tell him about a vehicle we are getting repaired that needs a part replaced. The shop that is doing it said the part they are replacing wa burned out and was not the correct part to begin with--the problem is my hubby ordered it himself on line about a year ago so it is NOT wrong--the repair shop is! argument ensues. the repair shop is ripping us off. hubby is right they are wrong. I knew this would cause an argument before hand and had told my self to lie to him about the part but I just could not do it. I suck as a liar. I tell husband that I am about to lose it so please drop it for now, but he can not drop anything. So I am yelling and he is not yelling but is critizing me and bossing me and then teen son jumps in and starts yelling at him to stop being so rude to me and he tells son to leave and never come back and I blow my cork and say many unkind and uncalled for things and say I am leaving for ever. I go lay on the bed to cool down and son and dad go at it some more and then son storms out of the house. I yell at hubby some more, then go looking for son. he is crying says terrible things about his dad and my hear t is breaking. I feel like ALS is destroying my boy's life. I know I am not setting a good example by yelling at dad, but I can't help it when I get mad I yell and it is so frustrating to deal with such a controling person. I get son to come home but husband thinks he did nothing wrong and that we owe him an apology. very tense in my house to say the least.

sigh......

[HelenL]

Oh Barbie, you are such a warrior queen, it's hard to remember that you are after all, only human. Wishing I could give you a gigantic hug, along with a stiff drink and a night out. Your hubby reminds me of my Dad, flashback to my teen years, but I was the one yelling at my Dad... Sending you a hug, wish I could do more, but I hear ya.

[notgivnup]

I am so sorry Barbie for what you are going through. I can not even imagine how difficult it is for all of you. I will be praying for you, your son and hubby. I hope you can find some peace soon. It's ok to blow up sometimes it is only natural. You are awesome and doing the best you can. Don't beat yourself up You are a hero to me. {{{{BIG HUGS}}}}

[brooksea]

Well, that all sounded familiar. I forget how old your son is, Barbie. My husband and son got into it all the time the last year of his life.

It may be better to "shield" your husband from issues such as car repairs, etc... if you can. I did the best I could in that respect, as my husband ALWAYS thought someone was blowing smoke up his ass (my ass). My thought on that was, "So what if they are. I've got enough to deal with without an argument and ensuing trip to a particular establishment with my husband to have him try to sort something out when they can't understand a word he says (and I have no clue what he means) and he pitches a fit." I learned the hard way!

Just another day in paradise! Maybe this weekend will be better for you.

[cairn175]

Barbie,

I am so sorry for all that you are going through. All I can say is that I'm sure you are doing the best you can & remember that. You are the easiest target for your husband to strike out at even though you didn't do a thing wrong. Hugs to you & wish I could help...hang in there.

Leslie

[themommy]

Barbie,
I am so sorry - things are hard for you. You need some time out with the kids - and leave hubby at home with someone to care for him. You need to pull your family back together. Seriously it will do you good.

Everyone needs time out once in a while and you all need to go out and have some fun! BIG FUN! Fabulous FUN...You will come back rejuvenated and renewed. We are headed to Callaway Gardens next weekend in Columbus GA. It is a wonderful place where the kids can be kids and you can relax and enjoy some time out....Its 7 hours away from Tampa. Hugs to you - Hugs to the kids.... We are all here for you!

[joni51]

Barbie don't beat yourself up. You sound like me, I think we both need a break. When Bruce never gives me a chance to sit down all evening, after working all day, I tend to lose it sometimes too.

[caldona]

Originally Posted by Barbie

It has been a tough week emotionally for me...while hubby is slowly declining, he is declining even though he denies it. He has been very tired lately, and looks thin and weak. He has been pretty regular in the poo department for several months, but was constipated this week. what a struggle! He had not gone for 3 days, so I gave him an enema. then another. then he demanded another. against my better judgment I did it. even though he was pale and sweating and moaning. good grief. He was still trying to control everything and I could do nothing right. I finally demanded that we get him off the pot before he collapsed. It took three of us to do it ... He was pasty white and sweating for a long time afterwards, and so weak all he could do was sit in his chair with his eyes closed all evening. very scarey and he is soooooooo bossy when he gets scared. he tries to yell at me but it comes out a weak squeal and I can't make it out and then he gets more and more upset that I am not doing what he wants how he wants and when he wants. Apparently I can raise 4 kids and run a business but I can't take care of him corrrectly...

Then yesterday, my son was being rude (as usual lately) to him and me. I was trying to cook dinner and getting irritated at him. hubby comes in and asks me about my day. all ok so far...I tell him about a vehicle we are getting repaired that needs a part replaced. The shop that is doing it said the part they are replacing wa burned out and was not the correct part to begin with--the problem is my hubby ordered it himself on line about a year ago so it is NOT wrong--the repair shop is! argument ensues. the repair shop is ripping us off. hubby is right they are wrong. I knew this would cause an argument before hand and had told my self to lie to him about the part but I just could not do it. I suck as a liar. I tell husband that I am about to lose it so please drop it for now, but he can not drop anything. So I am yelling and he is not yelling but is critizing me and bossing me and then teen son jumps in and starts yelling at him to stop being so rude to me and he tells son to leave and never come back and I blow my cork and say many unkind and uncalled for things and say I am leaving for ever. I go lay on the bed to cool down and son and dad go at it some more and then son storms out of the house. I yell at hubby some more, then go looking for son. he is crying says terrible things about his dad and my hear t is breaking. I feel like ALS is destroying my boy's life. I know I am not setting a good example by yelling at dad, but I can't help it when I get mad I yell and it is so frustrating to deal with such a controling person. I get son to come home but husband thinks he did nothing wrong and that we owe him an apology. very tense in my house to say the least.

sigh......

For constipation the nurse told us to warm prune juice I drink maybe half a cup. The Doctor told me to get dulcolax its over the counter.

[Barbie]

thanks for all your support everyone. My son who is 16, is such a teenager and is definitely full of anger over his dad's illness. He has been rude and beligerent to his dad mostly but me too. I let it get the best of me and popped my cork. the problem is I pop it too often. I am a very fiery person!

I knew the stupid repair was going to be an issue, and still I just couldn't tell a fib to him. Tomorrow I take it to a different shoe and no matter what, the part is fine!

PS. All poo came out the next morning. back on schedule. We use Miralax andit works good for us.

[skipper66]

It sounds to me that you are only human but extremely worn out both physically and mentally. Do you have anyone to help you so you can get a little time to yourself. Your poor teenage son is probally worried too death about his father. I am almost 46 and said some terrible things to my father the other day. I've since apologized. I'm just so angry that my dad got this horrible disease. He used to come to our house every day. He even took his grandchildren to school every morning. We try to get over to see him everyday but its not the same. He going to go stay with my sister in Dallas for awhile and go to a ALS Clinic there. I haven't been away from my dad for longer then two weeks my whole life. I'm glad he's going to get another opinion but I'm torn because I'll miss him so much. Hang in there.

[panguinjen]

Oh Barbie,
I'm so sorry! What a rough time you're having! I wish I could take some of it on for you! You are doing a great job and this will pass... It is so hard when roles change! Sending hugs your way....

Jen

[sadiemae]

I know about tryng to hide the truth when u know you can deal with it. Always comes back to bite you in the u know What. My
Daughter got in a fight at school(she did throw the first punch) but got her but beat. Not hurt other than her pride and school officiLs Di not know so she wont get suspended. I didnt't want Les to know but he heard Ally talking to me about it and last night was hell in our house. We are dammed if we do and even in more trouble if we dont. ALS SUCKS!

[DeansWife]

Wow Barbie, what a strong person you are! Get someone in to watch your hubby for a couple of hours and you and your son go out to lunch/dinner a movie - just get out of the house. It will give the two of you time to talk. Big, big hug coming your way! {{{{HUG}}}}

[momap53]

So sorry for the conflicts going on at your house these days.
I wish that we could wisk you and all the other CALS away for a long weekend of pampering and relaxation.

[Jennifer D]

So sorry to read about your struggles. My grandfather was as stubborn as mule before he got ALS and I think the frustration of the disease made it worse for him. I think because he could not control what was happening to his body he tried like hell to control everything else. For the most part it drove my mother, grandmother and rest of us nuts, but as you know love always over rides anger.

I just pray that my husband who now has ALS handles things differently, but only time will tell.

Your in my thoughts and prayers!