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Sep 19, 2007
Loved one DX
I have been caring for my fiance who was diagnosed 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.

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 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.
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.
I can relate

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 diagnosed 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.
thankyou denise

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.
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!
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
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.


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.

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
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...

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.
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

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, 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.
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