I need help

[stacey76]

I have been caring for my fiance who was dx with als about 6yrs ago and he is 40 yrs old. I care for him at home but we met in the nursing home that I worked at and fell in love. I love him more than you could imagine but he has made caring for him so difficult on me and even my family who also tries to help as he has spent a lifetime of pushing people away and has no family as he has either pushed them out of his life or they him. He is in an electric wheel chair which he runs with head and hand controls so runs around our small town alot to get out and about but uses his disability against me. Whenever we have a disagreement or he gets mad at me because I can't understand him he will run to social services or the hospital and tell them I am abusing him but after he does this and they are ready to put him in a nursing facility again he back pedals and says he lied and wants to come home. Social Services and the hospital don't even beleive him anymore and he even got me fired from my job telling lies and then almost did a second time with my new job tell I had my job talk with doctors etc. about him.
I have been reading about borderline personality disorder too and it's like reading a book about him so I believe he also has this from previous childhood expierences.
We have had a child together because I love him and he wanted to have one and he is a year old now and I am afraid of how he is going to be with his son. He can be sooo great one moment and then another time he will purposly hollow to wake up the baby because it upsets me. Most nights unless having a really bad night he will only wake me to turn him about 4 times a night and gets drinks and so on at those times but when he's mad at me about something he has me up constantly and I mean every 5 to 10 mins because I wrote down one night each time he woke me.
I don't know what to do ...he's jealous of anytime I spend with my family and has chased away all of my friends.
I love him and have no problems caring for him and yes i'm tired and I get frustrated but why does he do the extra mean things to me?? Will it ever stop??
I am mentally spent and physically....I am soooo depressed... I cry when I go to the super market for no reason. I have never been like this in my life and I don't want my son to grow up thinking this is who I am. I have no one to talk to and I feel like crawling in a hole .
Whenever I talk about maybe going into a nursing home with him he cries and begs me not to give up on him but he continues to be so mean to me.
I need some advice....someone to tell me i'm not alone....someone to care.
Stacey

[jimercat]

Stacey,

I'm terribly sorry you are going thru this! You are in health care, do you not have any colleagues that can point you in the direction of help with a solution? If not, what about the ALS Assco.?

Is he being seen at an ALS Clinic? The social worker there would be able to help you. He sounds very angry and this obviously is not good for you or your child.

He's had ALS for 6 years...now you have a child that is 1, perhaps he is realizing what he will be missing and cannot express this but with anger.

As for you, get the help you need from your doc by explaining your situation.

[stacey76]

He has made all of my friends which I used to work with basically dislike him in anyway so none of them will discuss him with me except to ask if he is doing okay. He refuses to go back to his ALS doctor and our family doc is at his wits end with him and does not know what to do anymore. They all know how I feel and what I am going through but it's like I have been abandoned because he has made them dislike him so much even though I have told them he is not always like this and that they only seem to get to see the angry, mean side of him and not the good.
When he is good he is soooooo good and I want to so badly for him to just accept and let his anger go and to enjoy his time with our son and I and he has even expressed this but when he's angry it's like a blind rage and there is no talking or calming him down.

[denise1965]

I am sole care giver to my husband with ALS. He goes through periods like you described each time there is a change with his present health status. He has been dx for 5 years but symptoms started 2 years earlier. I get the name calling, and such too, and the aggression. I am exhausted and have no family help with him. Since he has become total care it has gotten worse. I do agree with the other posting that it is they are realizing what they are going to miss out on to a point. But I have a backgound in Nursing and I am still puzzled. They MD started him on Xanax for the anxiety which seems to be helping with the agitation and aggression too.
Since I frequently feel like you do I joined this group just the other day and for this very reason I need someone to understand.
Denise

[stacey76]

It's nice in a way to know someone else know's how I feel but I also feel bad for you at the same time because I know how it feels too. I have been trying to con my fiance into getting on some meds but he always says he does not need them. However lately because he has been burning so many bridges with help I think I may have got him thinking seriously about getting on some medication as well as myself as I know I need it.
The company who pays me to care for him at home so we have an income and I can be with him 24/7 told him he had to get on it also because if he had one more episode of using his disability or me that they would pull his funding to stay at home and then he would be forced to go back into a nursing home as I would have to work and would not be able to care for him or afford to support all of us. Not to mention I just don't function properly anymore doing an outside job with him at home because I am constantly worrying and plus when he is being mean it makes it hard to get enough sleep or causes some kind of problem so my attention is back on him and no where else.

[jimercat]

Stacey and Denise,

thank you for posting both of your situations. I'm sorry y'all have a PALS that is emotionally aggressive towards you. This information is helpful for the rest of us CALS. I know y'all aren't the only ones on this forum that have experienced this from your loved ones. Any information you can provide in how you solve this dilemma will help others (like me) that haven't gotten to that stage with their PALS.

Y'all are angels for going thru this. I really don't have anything to say about what to do, since you both seem to have medical backgrounds, except that we are here for you. It helps to let all hang out even if it is in cyberspace!

I wish you both luck. Please let us know how you are doing!

[CindyM]

Hello Stacey and Denise, I want to assure you both that this behavior is not due to anything you did or did not do, and therefore nothing you can do or say can help the situation because, basically, we cannot control another's actions. I have faith that each of you will find the way to respond to this behavior, because at the end of the day that is all anyone can do-change our own response.

The big question is, how else to respond? The answer to this question can only come from either of you, of course, but I am hoping that within your town each of you will find someone to talk to who can help you sort things through. Be strong, don't lose heart, and reach out, please. Regards, Cindy

[nspoc]

Hi Stacey -

I think you are on to something with the Personality Disorder idea. The main point about borderline personality disorder is that you do not exist as a separate human being in his mind. You are a tool for his gratification. This is not something you can change by loving him.

If it were me I would let him go back to the nursing home. He is putting you, and possibly your child, at risk.

I do not mean to sound harsh, if you look back over my posts, that is not my usual style. But I am a psychologist and I have experience with this kind of problem. Any time you become a separate person he will become abusive to pull you back into compliance with his needs. There is nothing you can do to change this, except not comply with unreasonable demands.

I feel bad for the position you are in. As a caregiver, I understand the demands of this illness - but this situation is very extreme. You are talking about abuse, and medication does not fix that.

For your sake, and the sake of your child - Let him go back to the nursing home. You can always take him back at a later time when you feel stronger. I must warn you, though. As the time approaches for him to leave - he may become his most persuasive self and you will feel like relenting. This is a pattern that you must break. Let him go, at least for a while.

Denise - Your situation is also pretty bad - Xanax may not be the best drug - it is the shortest acting of all the benzodiazepams (anti-anxiety drugs). If aggression is a component there are better drugs out there. A family physician is inadequate to treat something of this complexity - get a psychiatric consult - best through an ALS center, if possible.

The good news is that if Xanax has some effect on his behavior - that means he is likely to be amenable to medications that are better suited to his problem.

For both of you - the loss they are experiencing because of ALS is not a reason for you to accept this behavior. Clinical depression and anxiety are treatable. Do not stand for abusive language or behavior. You will come apart, yourself, under the burden of this. See an ALS associated social worker. Call the ALS Association for a referral in your area.
Do something - it is time for action - especially Stacey.

Best of luck and please let us know how it is going for both of you - I care about you both.

Beth

[jimercat]

Beth,

Thanks for your input. Nice to have a psychologists point of view on this problem.

Stacey and Denise please let us know how y'all are doing. I hope both of your situations take a turn for the better.

[nspoc]

Hi Jimercat - Thanks for the good words. Your input is always the greatest.

To Stacey and Denise -

I called Xanax an Benzodiazepam - It is really a Benzodiazepine - the classification for that type of drug. I was mixing it up with the trade names of several drugs in that classification. Sorry about the technicality - but anyone who knows about these drugs would notice the inacuracy.

Take care and best of luck - Beth

[califsand]

Hi Stacey,

I can 100% relate to you regarding the mean behavior. My father is the same way and has had a lifetime of pushing people away. He does things at time just to upset me or my brother and I don't understand why he does it. Talking about it to him does no good at all. If I was in your situation, where I had the option of him going to a nursing home, I think that I would take it at this point. He is scared of you doing that and may be upset at first but it may salvage your relationship and give you and your son both the opportunity to have a more positive relationship with him. Maybe he feels bad that you need to care for him and he is expressing it as anger. I think that may be what my father does...

[stacey76]

I know in my mind you guys are right and I keep trying to do this to better the relationship between my fiance and and also make a good one between our son and his father but everytime I bring it up he cons me out of it which is exactly what Beth said he would do but I also have a hard time letting go and giving up which everyone in his family has done with him and I don't want to do that too.
I keep trying to find some other solution to keep him here with us so he can enjoy our son every day and spend his lasts days with us. When I committed to him I committed to everything and I knew what would come in the future and I want to be the one to hold his hand at then and tell him how much I love him so he knows not everyone leaves in the worst of situations .....some people actually stick by you no matter what but he makes it soooo hard to do this. I wish I could just find some way to keep him here with me because I don't think I am strong enough to let him go.
Stacey

[CindyM]

Hi Stacey, Maybe there is some room for compromise. Maybe it doesn’t have to be all or nothing. For example, maybe he qualifies for in home care, and you could get some time off while a professional manages his behavior.

Or maybe if he needs to go to a home you can still be a major part of his care. For example, my Mom is in a home but I feed her supper every night and shower her and do her hair at least once a week. When she was mobile, I took her out once or twice a week.

O maybe, you can do what another CAL decided to do. Her brother in law advised her to tell her PAL that she objected to his choice of words and to leave the room for a few minutes. His theory was that people who are totally dependant will quickly learn to modify their behavior if they are left to think about the effect on others. At least this is what one CAL learned.

Whatever you decide, we will stand behind you. You are in a difficult position that will take some thought in order to solve, but I am sure with some thinking the solution will come to you. I wish you every success! Cindy

[stacey76]

I just went in to feed him which he has not been eating well lately and he got mad at me because I was trying to get him to eat the important stuff and started calling me "Fat a** B****!!" and being very nasty so I got up to leave and then he looked at our son and said "Your mom's a b****!"
How can he do that to him let alone me ?? i just want to run away.
Stacey

[Al]

Stacey, speaking as a guy who has ALS you really do have to cut your losses here. This guy is being a total jerk. I know I have my bad days but never that bad. Put him back in the home. Maybe he'll come to his senses and if he doesn't you and your son at least won't be abused.
AL.

[Beebe]

Hi there, It's time to run. You have given your heart and soul to care for him. We know what a caregiver gives of themselves. Never sit down, interrupted sleep. constant caring!!! The disease makes him angry but, you didn't give it to him. There's just so much of hurting the one closest to you that a person can take. You are doing good and your little boy is hearing bad things about you. Not good. Maybe a separation will make him think about how good he had it at home. Your child needs you!! You need to stay healthy for him mind and body!!! We are here for you. Fondly, Beebe

[jimercat]

Stacey,

Think of yourself looking down on your life, as if you were an angel or god. You are hovering and looking at your life, you are an helicopter. What do you see?

You see your wonderful child that needs to be nurtured and helped to be an individual that is healthy physically as well as mentally. You see your fiance that is mentally abusive and you see yourself. You're...in the middle...what should you choose to do?

Go, go away from him...help your child to be the person they should be and try to live your life knowing you have done the best, for yourself, your child, and your fiance.

I know you cannot just up and go, but you could plan for it. Sorry to even have to be talking about this!

You do NOT have to subject yourself to his abuse.

Remember the "helicopter view." It has helped me.

[nspoc]

Hi Stacey -

At the risk of being too intrusive- I really think it is time for you two to be apart. It is really not an appropriate relationship for your son to be witnessing. It is also not appropriate for you to agree to stay with him no matter what. You are not helping the matter by not allowing him to experience the consequences of his actions. You are reinforcing that no matter how extreme and destructive his behavior - you will stand by him. There is no incentive there for him. It also teaches your child that men do not have to treat women with dignity.

There is no heroism here - only victimization. For your child's sake = please let him go. Your dream of a peaceful end with his family present is only a dream. This man will destroy all of your dreams.

Also - if your relationship does not currently include peace and calm respect - then you have abolutely no chance of creating that environment for his death - he will rip that away from you.

You can still love him while he is in a nursing home. But you can remove yourself from the abuse - and you can be a family when he can behave as a lover and father should. You will not be abandoning him - you will be acting as a mature adult in a more healthy relationship with him.

You cannot plead with him to behave, you cannot shame him into it, and you cannot get other people to convince him to change his ways. This is a situation that will not improve.

If not for yourself, pleae remember that this man's chaotic and abusive behavior is terrible for your child. Very little is more destructive than for a child to witness the abuse of his mother. He will feel helpless and traumatized for the rest of his life. And do not believe that you can protect him from the trauma - because that is not possible.

Your obligation is to your child because he cannot protect himself. You have an obligation to protect him from this chaos.

I understand that in some ways you "need" this man, abuse and all. That is not at all rare. I urge you to begin the separation process by seeking counseling at a center that helps abused women. They can help you with support, understanding and non-judgmental caring.

You have begun by reaching out to us - please keep going forward in your journey to health for you and your precious child.

I wish you all the best - and I have faith that you future can be one of strength and health and happiness.

I will be rooting for you - Beth

[stacey76]

Thankyou all for your input as it has helped me a lot and it helps to hear people's opinions who have an idea what I am dealing with. When you talk to other people who know nothing about the disease they automatically take to my side and I did not want that as I did not know what all to expect with the disease process with him. But when I write to you people here I know you understand both sides and will tell me fairly your opinion.
I know what he does is wrong but I always find myself making excuses for him because he has this terrible disease.
I went back in to talk with him and told him I will not tolerate his mean malicous behavior towards me and especially our son who is an innocent bystander. I told him that I have made the decision to move him into a facility that will care for him and I will make sure that we visit and he has as much time with his son as possible as long as he is no longer abusive otherwise it is his loss if he chooses to remain an angry, mean person to us. I told him that I will always choose our son over him as I will not allow him to ruin his life by showing him a father who only as anger towards him. I said he would soon see how good he had it living here and how much more he will miss because of his behavior instead of trying to make his last days as happy as possible. Don't get me wrong I can understand his anger but he has to find a way to deal with it without making the one's that care about him the most sad or hurt.
First he responded by saying "Good!!" But I told him I was leaving the house for a bit to unstress myself and when I got back he was crying and pleading with me not to give up on him . That whe would go to a hospital to fix what was wrong with him, see a therapist,get on medication. That he would do anything because he loved us both and does not want to be without us , that he did not mean to say what he said and just does not know how to control his anger but would find a way.
I told him I did not want to speak about it any longer and that I have made my decision because I just can't handle it anymore and I don't want our son to see his mother as a depressed, sad, angry, worthless person because I never used to be this way.
He continues to cry and plead with me and I just told him to please stop and make the rest of your time here with your family a pleasent one.
He is still crying and pleading as I write this which means a very very long night for me because I know he won't leave me alone till he goes.
Stacey

[CindyM]

Stacy- go on the internet and look up the nearest agency that specializes in women's safety. It may be a shelter for battered wemen, no matter. call them up and tell them you need support and advice about leaving an abusive person. Then, when they hook you up with a counselor, tell that person eveything you have told us. They will understand that, even though you are not in immediate danger, he uses his illness to try to control the situation emotionally and they will know how to support you in this situation.

Please write back to us and tell us what happens next! We are on your side. Cindy

[jimercat]

Stacey,

I pray that you will find the strength to follow thru with you plan. It will be better for all involved. Please let us know how you are doing. You are very brave.

[califsand]

Hey Stacey, just wanted to see how things are going and how you proceeded with your plans. I'm facing the decision you were talking about and it may help to hear how it went in your situation. Did your fiancee go to a nursing home? Was he really angry? Did he get over the anger? I'm more curious than I should be but I'm thinking of admitting my father to a Hospice House and scared to death about him being angry at me forever.

[Gina]

Hi Stacey!I am fairly new to this forum but i find it so helpfull.I have been reading over your posts and i agree 100% with what Beth the physcologist said.I will pray that you have the strengh to follow through on your plans.Your son desperately needs you and i cannot see any happiness in the future for you or your son if something is not done about this situation.You and your son deserve so much better.Please put your sons needs and yours at the top of the list for now!!!!all my best to you and your sweet little guy.....Gina

[freddiesnetty]

Hi,
I am knew to this forum myself, I have not read this post until today. Myself too lives with a little bit of a diva that has als. My husband was a musician for many years, I was his mgr. he got signed to a major record label. While opening for Sammy Hagar he fell off of the stage and then this nightmare began, we did eventually get married, he chased me for years but to no avail I gave him cause he was a "player" He is adopted, he has no family. His son is a up and coming musician and doesn't have time for him because of the way he treated his mother, I have to deal with groupies to this day and yet not a one of them are here of course now to help. He is hateful and unruly sometimes. He gets mad if I am not under his butt 24/7. He does have a homehealth care worker that comes in for about 7 hours a day 4 days a week, he does not play on her, but the minute I walk in he starts in on me. She has told me that he does not do that to her, she said that I should tell him that he needs to consolidate and let me rest instead of the jack in box syndrome (up and down) I did do that and it has helped, He is very tempermental anyways due to him being a musician, I dealt with that before, I have found that sometimes I sit back and think what if that was me......... I love him truly and I know he loves me the same way. I just get depressed sometimes wondering what if he wasn't sick ???? WOULD he do the same thing to me that he has done to so many other women? I have learned that praying and not dwelling on things I can not change has helped a whole lot......I didn't want to complain and have anyone think what a cruel inhumane person I am to think these things about someone so ill. Things are better now. His aide is like his mother and cuts him no slack with behavior and when he is mean to be she gets him....... I LOVE HER!! She has become part of our family. As always thanks for creating a place for us to come, some people don't even know what this disease is and don't understand.......Thanks!!
Annette

any tips on flipping our pals, I call mine the pancake(humor helps) hubby calls me the spatula...........silly..........but it is what keeps us going HUMOR is the best medicine sometimes!!

[CindyM]

Hi Annette- the biggest piece of advice I've heard around here is that you can't burn yourself out because if that happens you are no good to anybody. Take a hint from the health aide and have her model some ways to set limits gently but firmly. JMO Cindy

[esrich]

any tips on flipping our pals, I call mine the pancake(humor helps) hubby calls me the spatula...........silly..........but it is what keeps us going HUMOR is the best medicine sometimes!!

I totally agree about keeping your sense of humor. My husband was told to get a walking stick (instead of a cane) so I said in an email to several people that I was going to get him one of those big wooden ones and dress him up like Gandalf in Lord of the Rings. My husband and I apparently are the only ones who laughed at that. I guess our friends and family are still adjusting to the news even though we have been telling them for some time it was probably ALS.

[CindyM]

Oh I hear you. My DH and I joke about this all the time, and even the kids and my doctor are getting on board with the black humor. But these jokes do not seem to translate to the general public. People look shocked when I repeat them. But it works for us.