EL: How do you deal with it?!?

[brooksea]

Our son needs to see me happy. That ain't happening at the moment and hasn't happened for some time. It's not fair for him to have to go through the emotional turmoil in this household. Where did "happy" go?

It gives you pause when your son asks, "Mom, can y'all please stop yelling so I can listen to the thunder?"

After seeing the therapist today, I tried to put into practice his suggestion on handling late night, unreasonalbe demands (not those kind :roll. Well, that went over like a lead balloon! I told my husband I would like to plan ahead during the afternoon when I could understand him better to get all his computer gadgets (etc...............) set up when he was ready to get in his bed BEFORE it was so late and I was so tired. Of course, "all he wants" is this or that and then it takes an hour and a half, while I'm trying to get my son in bed as well.

I told him this would be the last night that we handle things this way and we would plan ahead and I would not do this again. He promptly told me "yes you will!" He then laughed! This is after yelling his head off in anger! He tells me that I have a problem!

I think the therapist's approach may work with a normal person, but not someone with EL. Or it could be my husband is just messing with me! :neutral:

 

[Miss]

It's not just your husband. I go through the exact same thing every night. Mine starts with my husband trying to put off bedtime. Since it requires my son to help, he is keeping him up, too. It just goes downhill from there. I am so tired of it. I also have a bad habit of catching a second wind after I close the door on him. I should be sleeping, because the demands continue all throughout the night. At least my son's bedroom is upstairs and he rarely hears the late night ringing of the bell.

 

[Katie C]

CJ... I know we've had this talk before but I still wonder if you aren't seeing early FTD rather than EL. EL as I understand it is uncontrollable bouts of laughter or crying, when not appropriate to the situation. Lack of empathy and disregard for others feelings are classic symptoms of FTD. I know all to well the feeling of "he's got to be doing this on purpose." I don't think he is. You really might consider getting an evaluation... our neurologist insisted the evaluation be done by a psychiatrist with a specialization or interest in neurological conditions. Its a condition that can at least be mediated with medication... but it frequently misdiagnosed by those who have never seen it. Not trying to be a downer... just want to see your circumstances be the best they can be!

 

[brooksea]

Shouldn't we both be in bed now?

My husband has all these electronic, computer, audio/video, wired/wireless gadgets! And, he wants these gadgets when he gets in his bed. He's not ready to go to sleep, mind you - oh no. Who has to hook this stuff up? Who has to troubleshoot? Believe me, there is always a problem and that is why it takes so LONG! I want to pull my hair out!

What pisses me off is that I can't understand him and somehow that's my fault. What pisses me off is that he can't move all his gadgets and somehow that's my fault. What pisses me off is after I get everything set up in the bed he has to get up to pee, not my fault! Then we start over again and we (I) can't get the stuff to work!

I think he is in denial and won't accept his limitations and cannot accept that we cannot BE him! I know that he has to be frustrated beyond belief! But, I have to say, so am I!

The therapist made a good point today: My husband needs to RESEARCH ways to help himself with communication. The technology is there (and he has it, even if he doesn't like it).

In the words of Tom Petty, I can only say, "stop draggin' my heart around..."

 

[brooksea]

Katie, it took me a while to reply to Missy. Sorry I missed your post in the meantime. I will Pm you. Thanks!

 

[lms9258]

Cj, I'm so happy about Katie's post, as I have been thinking the same thing...could be FTD. I did not reply (even though I deal fairly well with my mom's FTD), because Katie is very articulate, and great at explaining why it may be FTD--not EL. Plus, I type so darn slow, you would probably receive my reply too late for it to benefit you in a timely manner. FTD/ALS is extremely frustrating--Katie's quote about feeling, "He's got to be doing this on purpose", is one of the most crummy issues with FTD, because I'm not always sure about this issue either. I think both ALS and FTD are so challenging--they (symptoms, etc...) require care givers to constantly try to figure out what's going on, and what to do about it. I sometimes question whether I've made correct decisions, and that drives me crazy. But then I just tell myself, I'm doing the best I can dealing with these rare, devastating, and unpredictable diseases. I hope you were able to have a good conversation with Katie, because I also would like for your circumstances to be the best they can be. FTD stinks--but if your husband does have it--there are things you can do that might be helpful regarding your young son's stressful situation with his dad (yours too of course). I hope I didn't say anything out of line, or offensive.
I apologize if I did. Hope things stop being so overwhelming for you soon.
Laura

 

[stephie]

I am so glad to know that I am not the only one who really looses it at bed time! It is so frustrating when you just want to crawl into bed and you have to keep doing one thing after another. My husband can't speak or move, so he just gives me a stare that says "I need something." I have to continue guessing until I figure it out, then move on the the next request. My husband does not sleep well, so I turn on the T.V. and set the sleep timer for 2 hours. Maybe your husband would settle for this? The whole process of getting him into bed takes anywhere from 45 minutes to an hour and a half depending on what he wants. I try as hard as I can to take deep breaths and bite my tongue every night. Sometimes it works, and sometimes I explode. We just do the best we can, right? I think our kids understand better than we realize.

 

[joelc]

That is why I start being prepped for bed starting at 8:00 PM and it takes from 30 to 45 minutes. Then I watch TV for awhile. This way my wife does not have to stay up too late. If I need something she is getting good at reading lips.

 

[Katie C]

OH.. another point if it IS FTD... as with other dementias, "sundowning" is very common. It's most likely connected to fatigue at the end of the day, but it is not at all unusual for symptoms to be worse late in the day.. thus the difficulties surrounding a bedtime routine. In a very simplistic explanation: Someone with "only" ALS, like Joel, understands that there is a lot that goes into getting settled for the evening and plans accordingly. Someone with Double-whammy (a name coined by Dr North our neurologist) only knows that he wants what he wants when he wants it and honestly has zero concept or understanding that it impacts anyone else. My son likes to point out to people that the one thing he learned from his father's illness is that empathy is an important evolutionary skill! And empathy is one of the first things FTD patients lose.

 

[tdamess]

so much to deal with , and i have no words of comfort

 

[smwelder]

wow im still learning what else can come with this sickness. after my stroke and having to have others help me for the past 15 years the statement my daughter said "dad my best is not yours" thats all she had to say and it settled me down she was 8yrs old

 

[brooksea]

Thank you all. That's a lot to think about and study. Guess I will be contacting his neuro.

"Double-whammy"...interesting, but not fun at all. knows that he wants what he wants when he wants it and honestly has zero concept or understanding that it impacts anyone else That is my husband with immediate family. He doesn't act that way with extended family or friends.

 

[grandmommyk]

I am new to this forum , although not new to ALS. My husband was diagnosed in 95. I had to quit working over 5 years ago to be his full time caregiver. I thought I knew a lot about all this but am already learning things on here.

May I ask what the initials EL and FTD mean? My husband does have laughter at inappropriate times, but it seems better controlled now or maybe I am just used to it. We certainly have problems with the late nights though. I am surprised to hear others have similar problems.

 

[brooksea]

EL = Emotional Lability

FTD = Frontal-temporal Dementia

 

[Katie C]

CJ... just a note about "he isn't that way with extended family or friends"... Think about it.. those people have fewer expectations, and a different history with him.