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#1 Serena763

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Posted 22 August 2008 - 01:19 PM

My fiance was just diagnosed with Narcolepsy. It was a year and 1/2 fight to even get him to the doctor. It's been a year and 1/2 of dealing with Mr. Scrouge with Altimerz. He is in a horribly bad mood all the time, never remembers anything, and it's alwasy somehow my fault. Obviously sleeping all the time, and jerks so bad in his sleep he has been kicked out to the guest room. Also, there is no intimacy in any way for so long I am about to lose my mind. It has finally taken it's toll on my nerves and I have to take anxiety meds just to be around him. His personality has just taken a drastic nose dive...I don't even recongize him anymore. I can't talk to him about his behavior because he doesn't remember and therefor it's my fault. He just started medication...and I was just wondering that if I did marry him what kind of life do I have to look forward to? Will the meds really bring back the man I used to know and love? I'd hate to walk away from this and lose my family...but I know my happiness and sanity is important as well...I'm just so lost as to what to do. sad.gif

#2 Henry G

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Posted 22 August 2008 - 03:40 PM

Hi Serene,

So your husband has been recently diagnozed with Narcolepsy that on top of his Alzheimer? Hmm that is quite a biggie then, poor you!

#3 greatbig47

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Posted 22 August 2008 - 04:16 PM

QUOTE (Serena763 @ Aug 22 2008, 02:19 PM) <{POST_SNAPBACK}>
...and I was just wondering that if I did marry him what kind of life do I have to look forward to? sad.gif


You'll have a ring on your finger...That's probably the biggest difference between now and then.

You can't fix him. You can only do what you can do. Consider that it might not be the nacolepsy. You post could easily be translated thus:

"Are you people always this way, and if so am I going to have to put up with it after I marry this guy?"

1. Take the narcolepsy variable (stop blaming the Narcolepsy)
2. Weigh your choices

He could be in for a long journy ahead as far as medications go. Either you will be there or not. Both options should be able to made with out any guilt.

Lose your family? really? Your family would shun you just because you had to do what was best for you?

The drugs won't bring him back. You can't bring him back. The family around him can't bring him back. He has to do it himself, but the meds, the family and you can definately help. when it comes down to it, he has to make the big choices, and YOU HAVE TO LET HIM.

QUOTE
It's been a year and 1/2 of dealing with Mr. Scrouge with Altimerz.


I gather you were just venting when you said this...at least I hope. If words matter (and they do), that's very harsh critisism for one mate to say about another.

QUOTE
Obviously sleeping all the time, and jerks so bad in his sleep he has been kicked out to the guest room.


Did you "Kick him out"? Nothing says "I love you" quite like making a spouse feel like crap because of a condition they can't control. Sleeping all the time? Wow...imagine that...A narcoleptic sleeping all the time...How strange.

Have you done anything to help him with this...besides call him names and order him to another room? Have you gone to doctor appointment with him?

QUOTE
Also, there is no intimacy in any way for so long I am about to lose my mind. It has finally taken it's toll on my nerves and I have to take anxiety meds just to be around him.


Intimacy can be hard to achieve when your with a dictating, name calling spouse...be it you or him.

I'm not sure if your terms and (mis)use of the word "Alzheimer's" was meant to be literal or not (which is offensive to those of us who actually have had to painfully see Alzheimer's slowly shut down our closest loved ones).

I don't think narcolepsy is the problem. I think you both have MUCH bigger issues to deal with. Either you accept his issues as yours, or continue to live a "you VS. him" reality. That's up to you and you alone.

I'll pray for you both and wish you the best.

#4 Kimberly

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Posted 23 August 2008 - 08:54 AM

Serena,

It's clear to see from your words that you are frustrated.

You have come to a place where support is offered for both Narcolepsy patients and their loved ones; however, some of the attitudes that were expressed in your post may have come across in a way that is hurtful to some of the patients here. I just wanted to tell you that in a straightforward way.

Your relationship involves you and your fiance. First, I think you might want to look at your fiance and see what he is going through.

1) Stress of being engaged/married (even when you're in love, this is still stress!)
2) Stress of being tired all the time
3) Stress of falling asleep at inappropriate times
4) Stress of memory problems because of microsleep
5) Stress of hypnagogic and hypnopomnic hallucinations (which could be causing the sleeping jerks)
6) Stress of not sleeping in the same bed with you anymore
7) Stress of starting new medication
8) Stress of knowing that adjusting to medication is a long process
9) Stress worrying about the unknown - will he get worse? will the meds work?

He was just diagnosed with a lifelong, incurable illness. That is a LOT to weigh on someone's mind. In addition, because Narcolepsy does cause memory problems, (often times because we are in varying degrees of awakeness even when we SEEM awake), he might not have come to terms yet with how to handle that and could possibly even be in denial. Denial is one of the stages of grieving, and it is normal to go through a grief process in a situation like this.

You are also undergoing stress. Because the two of you are in a relationship, his behavior does have an effect on you. Moving forward, it is no longer going to be just you and him -- it's going to be you, him, and the Narcolepsy. (Of course, if you were to be diagnosed with something tomorrow it would be the same thing.)

Some people with Narcolepsy respond very well to medications. Some don't. Everyone has good and bad days. Looking ahead at your life, if you aren't prepared to take the good with the bad, then I would suggest that you have some thinking to do.

If you are committed to making a life with this man, I would suggest that while he is going through this initial diagnosis and starting on medication, that if you have frustrations you express them to a counselor or therapist. He may also want to see someone who specializes in counseling individuals with medical conditions. Once your fiance gets into a routine with his medication and the two of you start to see what his "new normal" is going to be, then the two of you may want to go to counseling together and learn some strategies for communicating and handling these symptoms together. If my husband kicked me out of bed because of my hallucinations, I certainly wouldn't feel like being intimate with him when I am already very very tired. Sometimes a neutral third party can help come up with alternatives when it's hard to see the forest for the trees.

I echo the suggestion to go to the doctor with him. Learn everything you can about Narcolepsy. Make sure that in addition to medication, that there is supportive behavior going on at home (going to bed and getting up at the same time every day -- even weekends -- allowing time for naps, eating right, exercising). Hold off on the "scrooge" and "alzheimers" comments because they are hurtful and he is fragile right now - that can really damage his psyche and his ability to decide to treat this condition.

The way your message came across, it seems like you may be a young woman with some maturing still ahead of her. Don't go looking to get your old fiance back, because he is not that person anymore. Be there with him now, learn what his new normal is going to be like, and make your assessment then.

#5 greatbig47

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Posted 23 August 2008 - 10:41 AM

QUOTE
You have come to a place where support is offered for both Narcolepsy patients and their loved ones; however, some of the attitudes that were expressed in your post may have come across in a way that is hurtful to some of the patients here. I just wanted to tell you that in a straightforward way.You have come to a place where support is offered for both Narcolepsy patients and their loved ones; however, some of the attitudes that were expressed in your post may have come across in a way that is hurtful to some of the patients here. I just wanted to tell you that in a straightforward way.


Thanks Kimberly...and you are right...

and Serena76, I'm sorry if I came across a little too harsh. My personal past was full of name calling served with a total lack of understanding.

Kimberly is right...educate yourself, and try to see yourself in your Man's position. THere's a chemical missing in his brain that keeps him from knowing when (and when not) to sleep. He can't help this anymore than an amputee can help not having an arm.

Go to a conference, and be educated. Knowledge and understanding goes a long ways. You don't have to think your future is going to be full of gloom. Knowing why your guy acts the way he does can be a real insight. I highly recomend going to a Narcolepsy Network conference...if you're serious about getting in touch with what is up with him, NN has yearly conferences that are life changing and eye opening.

I might add that everyone seems to be sad when they are over. It's the best chance for you and your fiance to store up on some ammunition when having to battle his symptoms. It's an amazing feeling when you get a bunch of people in the same room that know exactly what you're going through.

Again...sorry if I came across as too abraisive. When your educated, you might understand why.

Welcome to the site...I should have started off the post with that wink.gif

-Stu

#6 Damian

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Posted 23 August 2008 - 11:21 AM

unsure.gif How about a mans view on this:-

please, do not think when reading this.I am implying this to all relationship I am not.

This is only my experience and do not wish do put false hope on anyone else.


I have been in a "relation-ship" for many years and after 3 and 6 years of being together 24/7. It slowly got to the point where I realised why they called it that.

In this relation"ship" just changed from, around the med cruise to the Titanic. laugh.gif


It did start off great. I mean I wouldn't of wanted to be with anyone else, (soulmate). At first she just had a basic knowledge of my sleep disorder. As time went on unfortunatly It got to much for her and she called it a day. She ended up hating me cause of different moods I would wake up in. Even when I try to restrain the mood, angry.gif this was usually worse for me when waking.
Anyway things became issues for us one by one.

  • Naps Numorous times daily.
  • Getting up,on a bad day.
  • Collapsing, around the home, in public,with family.
  • Attending all different appointments GP/ Specialist. MSLT,EG,ECG,MRI'S
  • sleep paralysis. Frightened or panic when I wake up quick.
  • Talking in sleep, Hypnagogic Hallucinations( sometimes kicking,punching out because of dreams.)
  • Medication changing.
  • Slowly move up scale from class C ,UP TO B, then A,AS well as anti-depressants, move from provigil/modafinil up to dexidrine.( different mood low labedo, wanting to eat at different times cause of surpressed apetite.Then in comes Xyrem. ohmy.gif
As these meds have different effects on different people. I have changed as a Person I mean don't laugh like I want to, Don't want risk injury doing certain sports etc.

I thought she lost out on certain times etc because of my condition.
I thought she would under stand low labedo.
Amount of time taken by my Gp, Specialist, test's and pharmacys, it is a long time for the person that is always waiting.
Getting abit better then tolerance build up to meds. and so on.
End up me feeling miserable for her. That feels bad especially when you remember things you done before condition progressed on.
For me, collapsing happens when lauging being shocked/startled even a deep cough, stressed out (need to do something or getting that frustrated that you can't do more, could all send a trigger for an attack on me.
When you ain't there, its has a knock on effect, less will,appetite change, bigger moods, less conversation, We want to get up just to spend our awake time with your loved one.

So if you male or female when you are not there, we lose more than just a partner.


The End


#7 Serena763

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Posted 25 August 2008 - 09:37 AM

I guess I need to explain what all I have been going through this past year and a half so perhaps my post does not seem a bit harsh anymore. We raced motorcycles and he wrecked breaking a few bones. I had to do everything for him and had no problem doing so. This is when his personality and sleep habits changed as well as his libido. I thought perhaps it was because of his injuries and his pain. As he healed things did not change- it got worse. He was constantly mean, and extremely negative about everything ALL THE TIME. He saved the worst for birthdays and aniversarys. Despite my attempts to get him to the doctor it was all my fault and I was the one with all the problems. One morning my car broke down and I was late for a huge meeting at work. He left me stranded on the side of the road because "I" dry.gif had an attitude and broke up with me because I was nothing but drama that he didn't want to deal with it. That strikes deep when you've had to come get him when his truck broke down, and nursed him back to health after his accident for several months. This was the ONLY time I have EVER asked him for help btw. I lost my job because I couldn't make it to the meeting in time BTW. Several months passed and he was begging to get back with me. He couldn't remember all the nasty things he had said and accused me of, and he couldn't even remember why he broke up with me. He had no answers even when I played him the nasty voicemails he left me. He seemed to be better, but still not himself. He quit his second job blamming it on the stress and that he was just burned out. He got worse- much much worse. My new job was very demanding and also wanted me to go back to school. I also had to do everything on top of that and take care of his daughter too. He was getting incredibly mean, incredibly negative, and sleeping 24/7. Now in front of his daughter verbally attacking me for no reason. Of course he remembers nothing so it's all my fault. Unacceptable. If you think calling him Mr. Scrouge with Altimerz is mean...it's NOTHING compared to what I have been called, labeled, accused of, blamed for etc. Kicking him out of bed mean? He kicks and slaps me all night. After getting yelled at all day I have to get beat up all night? Unacceptable. Yes, I have been to every doctor appointment with him, usually with him kicking and screaming the whole way and back. Yes, I have been incredibly supportive with everything including the lack of libido. I've gotten no apologies and no Thank You's- just constant yelling, negativity, and blaming. I'm 25 y/o. I don't know many 25 y/o's who would sacrifice all that I have and stick around for all of this. I think just about anyone would have walked out a long time ago. It has been incredibly unfair to me. His behavior has caused a lot of destruction and heart ache with me, his daughter, and our families. If being frustrated and angry over all of this makes me immature, then so be it! I'm immature.

He's on day 4 of his medicine and he seems to be doing better. He's not sleeping during the day, I haven't been yelled at yet, and his libido is improving. I've told him it's up to him now I have done far and beyond my call of duty.

#8 bagpuss

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Posted 26 August 2008 - 07:28 AM

MY EX ALSO HAD A HARD TIME AND I FEEL FOR YOU. I LAUGHED WHEN HE TOLD ME THAT HE WAS ENDING IT BECAUSE OF MY NARCOLEPSY.I DONT BLAME HIM THAT WAS UP TO HIM.IT WAS NOT SOMETHING THAT I COULD CHANGE.THIS IS WHO I AM . MY MUM WAS A MANIC DISPERSIVE AND WHEN YOU CARNT SEE AN ILLNESS ITS HARD. ON BAD DAYS I USED TO THINK OF HER HEAD TO TOE IN PLASTER AND HOW I COULD HELP HER.



WISH YOU ALL THE BEST AND GOOD LUCK

#9 Lovemyhusband

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Posted 26 August 2008 - 09:11 AM

Serena, Let me start by telling you I am a loving wife to a PWN. I know what you are going through and understand what its like to loose a little bit of your own heart because you can't help. With that being said I think you need to stop with the lists of the things you do for him. If you truly love someone with all of your heart you don't keep a record of what you have done for them and what they have not done for you. If you are looking for a gold medal because you have helped him in a time of need you should walk away right now.

As for the slowing libido, when you have been awake for what feels like 72 hours are you raring to go? Try initiating something you know he enjoys and go from there. I have been with my husband for over 19 yrs now and up until last year we would make love almost everyday. Since he has started his meds he is only capable 2 - 3 times a week. Its a huge adjustment but not one I can't live with. Try cuddling at night without expectations, it can be very rewarding. I also have to say that sex is another form of communication and you should do what you can to make sure you still have that connection whether is one sided or not. As for sleeping in separate beds I don't think its a bad idea. I have been accidentally hit at night and as much as it hurts me it makes it 10 times worse for the person who has no control or memory of doing it. I decided to move out of our room after talking to my husband about it. I didn't make any demands or kick him out.

I noticed in both of your posts you talk about the effects this dx has on you and what you have lost. Have you sat down with him and asked him what he is feeling? How he thinks things are going? what he would like to get out of his Dr visits? What treatment course he wants?

I don't want you to think I am being unkind, thats not my intention. There are two ways to handle this dx. One is to look at it for what it is and move forward together. The other is to walk away and not look back.

I have many days were I feel like a single parent, but I don't hold that against Andre. I embrace the fact that he is still with me and will have several good days ahead. Its not easy but it is easier if you don't force life to happen. Let things happen and go from their. If your relationship is so damaged you have only negative thoughts in mind you need to make choices. Staying with a person because you feel guilty is not the answer. You will end up a bitter, unkind and unloving person.

I am always here to talk if you would like. I don't hold back what I think but I am a hopeless optimistic person and things can only get better for you and your fiancé.

#10 sleepaholic

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Posted 26 August 2008 - 03:32 PM

Well it sounds like you both need to do a little soul searching. If he can't accept his condition and truly want to make things better for himself and ultimately his family then it is probably not going to work. You can't force someone to change, they have to WANT it for themselves and for the people who love them. I was recently diagnosed with N about a month or so ago...I am married (for 7 years) and have 2 young children. I was just relieved to finally figure out what the problem was. Now that I am aware of my condition I make every effort to improve my health - both physically and the 'health' of my family. I am open and honest with my wife and I don't make excuses (very important). If I am unable to do anything because of my condition then I make it clear to her...'honey, I honestly need a nap, but I will clean the kitchen when I can.' I don't just crash out on the couch because I can play the 'Narcoleptic' card - which I could easily do. Sometimes you just need to use a little 'will-power' and dig deep as a narcoleptic, but sometimes no matter what you do the condition will win. There is really a balance there. I have good days and bad days just like most pwn, and most days it is a battle to make it through the day and accomplish a days work. But, it is a battle that I must win. I love my wife and my children more than anything and want to be the best husband and father I can be...if that means that I have to expend every ounce of energy I have, then so be it. As for you, you need to really think about having some 'adult' conversations with him...telling him how you feel and letting him tell you how he feels and what he is going through. The negativity really will make it worse. Forget about the past, live in the now, and plan for the future. One of you must make the first move to repairing the damage and moving on. If you two are truly commited, then you won't let the other one 'give-up'. Is he sleeping 24/7 because of his N or is he sleeping 24/7 because he is unhappy with his life (big difference). Help him not to 'give-up'

#11 sleepless sleeper

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Posted 13 September 2008 - 10:22 PM

QUOTE (sleepaholic @ Aug 26 2008, 02:32 PM) <{POST_SNAPBACK}>
You can't force someone to change, they have to WANT it for themselves and for the people who love them. I was recently diagnosed with N about a month or so ago...I am married (for 7 years) and have 2 young children. I was just relieved to finally figure out what the problem was. Now that I am aware of my condition I make every effort to improve my health - both physically and the 'health' of my family. I am open and honest with my wife and I don't make excuses (very important). If I am unable to do anything because of my condition then I make it clear to her...'honey, I honestly need a nap, but I will clean the kitchen when I can.' I don't just crash out on the couch because I can play the 'Narcoleptic' card - which I could easily do. Sometimes you just need to use a little 'will-power' and dig deep as a narcoleptic, but sometimes no matter what you do the condition will win. There is really a balance there. I have good days and bad days just like most pwn, and most days it is a battle to make it through the day and accomplish a days work. But, it is a battle that I must win. I love my wife and my children more than anything and want to be the best husband and father I can be...if that means that I have to expend every ounce of energy I have, then so be it. As for you, you need to really think about having some 'adult' conversations with him...telling him how you feel and letting him tell you how he feels and what he is going through. The negativity really will make it worse. Forget about the past, live in the now, and plan for the future. One of you must make the first move to repairing the damage and moving on. If you two are truly commited, then you won't let the other one 'give-up'. Is he sleeping 24/7 because of his N or is he sleeping 24/7 because he is unhappy with his life (big difference). Help him not to 'give-up'


I am bawling my eyes out. I can so completely relate to what you've written and a couple others. My life AND the lives of my children and husband have been devastated by my narcolepsy. The ability to "dig down deep" is getting harder and harder every day. The other day my two year old begged me to please stay awake and then for the first time in his life told me he was bored. My heart was torn in two and I was helpless to get up. I do understand where this woman is coming from, though. My father had exactly what I have, and I would get so fed up with him. I cannot imagine being a dedicated fiancee. Give this lady some credit for coming to this forum and trying to seek advice to help her salvage her relationship. My husband is basically a single parent and it is a heart gripping experience to distantly hear my husband tell my children that "Mama's sleeping" when they ask for me, yet I'm powerless to move. The only thing, though, is that everyone is right: the anger issues MUST be dealt with. No one can enter into a healthy lifelong commitment to anyone or anything with any resentment. I whole-heartedly concur that if the anger cannot be completely eliminated, then it is best to move on. If you were already married and he progressed to a point that he could not function on his own, then I would not say this, but you are thankfully not in this position. You are not responsible for him, but once you become married then you will be co-responsible for your marriage.