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Abuse To Family Members


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#1 3girls1boy

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Posted 19 July 2008 - 04:10 PM

I hope that I'm in the right group, I myself do not have narcolepsy but my husband suffers from severe narcolepsy. This is the only place I could find hoping that someone could help me to understand whats going on. My husband was diagoinsed with narcolepsy about 3 years ago, he now is disabled from it. In the past year he has changed so much. Before he was fun and loving but now he is someone that our family does not resonize. I understand how the narcolepsy works and how much life it has taken from him but what I don't understand is where are these huge rage and anger episoides coming from? Just the smallest thing will set him off and it scares me that one day he is going to hit me or the kids. He admits that he targets our oldest daughter when he is having one of his rage fits. What are we susposed to do? I try to understand, I try not to tell him to go to bed when hes getting sleepy and I try not to make jokes about it. I notice when hes getting sleepy this happens most often. Does this happen to anyone of you? If so, how does your family handle it? Are susposed to just take the abuse? Please help me to understand, we do not any type of groups here so this was my only place to try and find help.
Thanks so much,
Tammy


#2 Lovemyhusband

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Posted 20 July 2008 - 08:27 PM

QUOTE (3girls1boy @ Jul 19 2008, 05:10 PM) <{POST_SNAPBACK}>
I hope that I'm in the right group, I myself do not have narcolepsy but my husband suffers from severe narcolepsy. This is the only place I could find hoping that someone could help me to understand whats going on. My husband was diagoinsed with narcolepsy about 3 years ago, he now is disabled from it. In the past year he has changed so much. Before he was fun and loving but now he is someone that our family does not resonize. I understand how the narcolepsy works and how much life it has taken from him but what I don't understand is where are these huge rage and anger episoides coming from? Just the smallest thing will set him off and it scares me that one day he is going to hit me or the kids. He admits that he targets our oldest daughter when he is having one of his rage fits. What are we susposed to do? I try to understand, I try not to tell him to go to bed when hes getting sleepy and I try not to make jokes about it. I notice when hes getting sleepy this happens most often. Does this happen to anyone of you? If so, how does your family handle it? Are susposed to just take the abuse? Please help me to understand, we do not any type of groups here so this was my only place to try and find help.
Thanks so much,
Tammy



((Hugs)) for you Tammy. Being the spouse of someone who has N is not alway easy. With that being said it's not easy being the person with N. I am the wife of a pwn so I know what you are going through. I find on the days Andre lashes out at me or the kids it's not because of us it's because of the frustration of living with N. That is by no means an excuse for that kind of behavior but it does put it in perspective.

We just went on vacation and the entire time Andre was what I call his evil twin. It bothered him that I was going out with the kids and leaving him to sleep until his body was ready to get up. I didn't think about how it would affect him, leaving him out of some of the activities. On a daily basis I spend more time trying to accommodate him and in the end what I am doing is excluding him from things. It was never my intention to exclude him but that is how he was taking it. I am actually glad we had that big blow out. Now that we have communicated the differences in our perception of what was taking place we can now move forward in correcting things.

I always find that putting your honest feelings on the line is the best way to correct the problems. He may not want to hear that he is being unbearable but if thats what it takes to get him to lighten up than thats what needs to happen. Another thing to check on are his meds. Thats another place the anger could be coming from. Has he had a recent change in meds or change in dosage?

I am always here if you want to talk. This site has helped me a great deal and I am sure it will do the same for you.

#3 MEColumbo

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Posted 21 July 2008 - 06:21 PM

Tammy, before i was diagnosed, and before i started getting treatment, i was very much like your description of your husband. Sometimes when i'm with my family and we're all sitting around talking, the subject of my "condition" as they refer to it will come up. And when i listen to the stories of how i treated the people that i love most and lashed out at my own mother, i could cry. When people ask me what it's like or why i'm so crabby, my answer is usually along the lines of suggesting an experiment. Try to stay awake for as long as possible, maybe pull an all-nighter and stay up as long as possible the next day. When you get to the point of extreem exhaustion, imagine how wonderful it would feel to just sleep. Now you're physically and mentally drained. Now put a smile on your face and pretend you're not tired. Go have family time and be a "Mary Sunshine". It's very hard.

Before i was medicated, this is how i felt 24/7. And ironically, i physically no matter how tired i was i never had an entire night's sleep. When i went to bed at night, it would take hours to fall asleep, and i would only sleep maybe 20 minutes at a time, and it wasn't good refreshing sleep, because i would get the halucinations, and the paralysis which would make me absolutely terrified (i still get them at least twice a week).

I was so so so mean to everyone i loved (because i was comfortable around them). And when i would lash out at my big brother because he wished me a happy birthday and patted me on the head or yell at my mother because she asked me how i'm doing today, i would see the hurt in their faces, and it would make me feel 100 times worse. On top of feeling like a pile of crap because of the disease itself, i'm getting angry with myself for being like this, because it's not the way i want to treat people, and sad to say, the angrier i got with myself the more i took it out on them and it was an ongoing cycle.

So Tammy, i don't know if that makes any sense to you, but you need to know and keep reminding yourself and your children that the last thing your husband wants is to hurt any of you. When he lashes out he's doing it on the outside, and on the inside the entire time, he is saying to himself "STOP, WHY ARE YOU BEING LIKE THIS??" I asked myself that question several times a day for several years.

#4 greatbig47

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Posted 21 July 2008 - 10:50 PM

Tammy,

First off, let me say that by coming to a board like this one a pouring out your fears takes a lot love for your family and your husband. Your asking questions, voicing your concerns and seeking help. There are plenty of spouses that don't give a damn, and I hope you can take a breath and give yourself the credit you deserve.

Since your situation echoes various parts of my past, I hope you don't mind me being as honest as possible.

QUOTE
I hope that I'm in the right group, I myself do not have narcolepsy but my husband suffers from severe narcolepsy.


Your in the right group, and you are encouraged to come here often. We are here for you and your husband...It is WHY we are here.

QUOTE
My husband was diagoinsed with narcolepsy about 3 years ago, he now is disabled from it.


Are you saying his symptoms have gotten worse? Are you saying he is completely without hope of ever working again? The term "disabled" can be so broad in definition. It puts a big sign over us that says "Hey! Look what I can't do!". I personally think the word is degrading, and sets us up for failure.

Three years is a fair amount of time to come to grips with a condition. Every one of us is different, and we find our own strategies in our own time lines. A man who has been colored "without ability" could start believing it sooner or later (think about it...that is exactly what the term means).

QUOTE
In the past year he has changed so much. Before he was fun and loving but now he is someone that our family does not resonize.


His lips are the same lips you kissed on your wedding day. The way his mind works is exactly the same as when he was "fun". Those hands you held when walking together are the same hands. He is NOT someone different...he is himself. His actions may be new to you, and possibly scary as hell recently, but he has the same memories of what got you where you are now that YOU do. I know it can be VERY frightening. It's sad that he is having trouble being recognized at a point in his life where it sounds like that is exactly what he needs the most...to actually BE recognized.

QUOTE
I understand how the narcolepsy works and how much life it has taken from him but what I don't understand is where are these huge rage and anger episoides coming from? Just the smallest thing will set him off and it scares me that one day he is going to hit me or the kids.


If this happens, Tammy...get help immediately. Move your children to a safe place, and seek the very best help you can find in your area. Quite honestly, I highly doubt this will happen.

So where are these fits coming from?

Okay...here's a good oppurtunity to step back and give yourself some kudos for asking the right questions. Seriously...this is probably your million dollar question. I'd be handing you a smelly load of BS if I could give you an answer with confident conviction. Only your Man could do that...and HE may even have trouble getting the right words out.

I can offer what I think might be some possibilities, and I can only encourage you to consider them...

It has been my experience that the condition we have doesn't cause nearly as much life muck as the issues that surround the people with the condition. No one has ever died from Cataplexy. No one has ever had a fatal case of narcolepsy. No one has ever died from sleep paralisis.

BUT...falling down when you laugh a couple thousand times (only to hear "what the hell is wrong with him?") can really play with a guys head. Having to live a life of "Are you sleeping again?" can really get tiring after some years. And as far as sleep paralisys goes, It is EASILY the most terrifying experience I have ever experienced...and many of us have an actual fear of sleeping we live with. If you understand the condition, can you blame us?

It's not the condition itself, but what comes WITH the condition. Please keep that in mind.

Perhaps he needs some time to feel "abled". Perhaps some time needs to be focused on what he CAN do. While his fits of rage may seem angry, they sound as if they are full of frustration. Perhaps he would appreciate getting in touch with his worth. We ALL like feeling we are full of purpose, right?

I don't mean patronizing...I mean TRUE purpose and worth. You can't give it to him...that is purely up to him. But giving him the safety and encouragment to feel good about himself might help. Humans are like that...we need to feel safe to be ourselves, and we ALL like encouragment.

QUOTE
He admits that he targets our oldest daughter when he is having one of his rage fits.


I doubt that the narcolepsy is the biggest issue. It sounds like the issues wrapped around his condition could possibly broadcasting completely different symptoms...Depression? Frustration? Fear? Perhaps self-doubt?

QUOTE
What are we susposed to do?


* Keep asking the questions you are asking, and give yourself credit for that.
* When alone with him, ask him what is REALLY bothering him, and do everything you can to let him feel safe to talk to you.

and then...LISTEN! Don't give your 2 cents...don't judge him...don't tell him that he's wrong (or right)...
Just listen. When your being his listening soulmate, maybe repeat what you're hearing ("so what you're telling me is"...or "what your feeling is...")

* If medication is involved, ask if he needs help reminding when to take it (maybe explore trying Xyrem?)
* Focus on positive change. What we think about, we bring about
* Recognize him
* Talk to a therapist. Not to treat him...but to treat your family...yes..ALL of yuz! He's not alone in this.
* love, love, love....kooky as it sounds, it will save your family when everything is as gloomy as possible
* Attend conferences... The power and resources gained from them can't be expressed in words (NN in having a great one in October...it can be life changing...AND a great little getaway as a couple!).

QUOTE
I try to understand, I try not to tell him to go to bed when hes getting sleepy and I try not to make jokes about it. I notice when hes getting sleepy this happens most often.


He's a big boy, he doesn't need to be told when to go to bed. I lost my bedtime when I was 13.

Sometimes to learn lessons as adults, we need to be able to be adults.

I would certainly hope you wouldn't joke about it. You can joke about it all you want when you're narcoleptic. Until then know that ANY kind of joking about a condition that is out of our control is as rude as laughing at handicapped kids in wheel chairs. While our condition isn't as visually obvious, joking at our expense shows horrible character. It's been my experience that many narcoleptics feel this way, but we don't say anything.

Please don't think I'm singling you out on this one. I've just seen massive damage done to family relationships all because of some seemingly innocent ribbing at our expense. Words matter.

QUOTE
Does this happen to anyone of you?


Of course! It happens to humans all the time! We are wired to act upon our feelings.

yeah...I'm a guy...and I have feelings...and I'm okay talking about it...got a problem with that!?!?!
(sorry, I had lighten up a little)

We ALL get cranky when we are tired, narcoleptic or not. This is why I was saying that I doubt that your husband's narcolepsy is the biggest problem.

QUOTE
If so, how does your family handle it? Are susposed to just take the abuse?


No one deserves to be abused, and it's okay to let your husband know this. Let him express his anger, but don't allow ANYONE to cross that line. While it may not be physical abuse, verbal abuse can mess us up just as much. Don't stand for it. Life is too short to put up with it.

You always have choices...
Abuse him back...
Get up and leave...
Deal with it as a family, and allow some wounds to heal...

Only you know what is right to do.

QUOTE
Please help me to understand, we do not any type of groups here so this was my only place to try and find help.
Thanks so much,
Tammy


Tammy, welcome to the community. Know you are not alone.
We are so glad you fond us.
You and your husband are ALWAYS welcome here. Please encourage him to get online here and poke around.
We really are one huge, sleepy family....

love and prayers
-Stu






#5 Lovemyhusband

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Posted 22 July 2008 - 09:02 AM

Stu......your wisdom brings me to tears some days.


Tammy I hope all is going well these days. Keep us posted.