Not so good news

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vic0613

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Just wanted to let everyone know that me and my husband have split up. I did not want it to turn out this way with him being sick and not understanding whats going with his cognitive changes plus the ALS but the violence and the name calling got to be to much and my daughter can not be around that she is only 2 and she is like a sponge taking everything in. We still go see him and I am still taking care of all the doctors and making sure he gets his medicine I am not going to abandon him he is with his brother now and they have all seen how bad he has gotten in the last 3 or 4 months with his temper. Will be back with more news later.
 

nspoc

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Hi vic0613 -

Very sorry about what you have experienced. I read your previous posts and I was quite concerned. It sounds like he has a cognitive/organic problem. I was quite worried because my experience is that counseling does not help a lot with that - meds might help, though.

I cannot imagine how hard it was for you to make that decision - I admire your courage in taking care of yourself and your child.

If your husband becomes too organic the only safe place for him could be a hospital or nursing home.

Of course I do not really know your circumstances - perhaps he was this way before his diagnosed. At any rate - I will be thinking about you. Please keep us up to date. I want to support you as you go through this.

Beth
 

Paty

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Hi Vickie

Hi Vickie:

I read your other posts and thought things were going to change for you, I am sorry things didn't work out, but I am sure you took the right decision, your child has to grow in a a good environment, things that happen to us at that young age will always leave marks on ourselves impossible to forget.

I have suffered verbal abuse from my husband of 36 yrs. he was diagnosed on Oct. 17.05 and this last yr. he has changed a lot, friends and relatives are always telling me that is the sickness that makes him act like this, but Cindy and some other friends have opened up my eyes concerning this subject, no one no matter how sick they are have the right to act like this (maybe only those that suffer cognitive changes). But someone like my husband who acts completely different when visits are here and changes completely with me when they leave, is something else.

He can barely talk now and we communicate using and alphabet and eye gestures, guess what he had me write? " I WISH I COULD KILL YOU" , I think that with the help of Cindy I've grown stronger and do not pay attention to his behavior.

Well Vickie I wish you the best for you and your little princess.

Paty
Husband's Caregiver DX 10/17/05
Baja California, Mexico
 

CindyM

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Paty, I hardly know what to say about all the nice things you have to say about me. Thank you so much! I told you about setting limits and removing yourself for a few minutes from his abuse because that's what I see the nurses and other caregivers do with dementia patients. Of course they make sure the patient's needs are met and he or she is safe first. And I know you won't leave Jorge for long periods when he is so dependant.

Vicki-it sounds like you have found a compassionate solution to a difficult problem. I commend you for taking what must have been a hard step. Write often and tell us how things are going! Cindy
 

vic0613

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Update

Finally got moved into my apartment and things are going good. My husband went to the doctor on the 8th and they still want to do the peg tube but he wants nothing to do with it he lost another 3 pounds and also they want to make custom braces for his feet but he doesn't want to do that either he is not doing very well standing on his own and his speech is getting alot worse but his brothers are looking after him and he is in a good place with them. Took Jenna to see him for fathers day and they all spent the day together while I finished moving. Will let everyone know more when it happens everyone have a good day and talk to everyone soon.

Vickie
 

Al

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Hi Vickie. Glad to see things appear to be getting better for you.
AL.
 

CindyM

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Hi Vickie- thank you for the update. I was thinking about you! Cindy
 

JACKIEMAX

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verbal abuse - note to paty too

paty has become a good friend, and i have written her several private messages in regard to the verbal abuse from her husband, jorge. one thing i advised her was to tell him that as his sole caregiver she has the option of just walking away and letting him sit there alone and wonder what was going to happen to him. i don't know if she ever did that, but verbal abuse should not be tolerated. in some cases, i blame the disease and the horrible thoughts that go through the patients' heads, but that is no excuse for this.

if paty would walk off one day and leave him alone for a few hours to prove she meant business about not taking his abuse, i wonder if it would change anything.

am i mean-spirited to feel this way and give this kind of advice. fortunately, my husband has not taken too much of his stress out of me yet, but i am concerned about my good friend paty, and others that suffer this kind of abuse.

jackiemax
 

CindyM

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I've advised the same thing, Jackie! In fact, This is where I always say that just because a person is sick he or she does not have the right to be abusive. Some dementia and Mental Health patients do not know what they are doing or saying, and even then the staff in charge set limits on the behavior. Usually they walk away and leave the patient on their own for a few minutes, just like you advised. So you are on the right track! Cindy
 

janf

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I just want to say i'm so sorry for these abusive situations, you are in my prayers . As they say we can look around us and see others in pain also. Just know that you are loved by us and we are here for you . JANF
 

vic0613

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Just wanted to let u know about the verbal abuse I have tried to differnt angles on how to handle it before it came to me leaving. I would walk away and go into another room I would leave the house and u have to understand to he is home all day while I am at work and the baby was at day care. He didn't want anyone to come in and try to take care of him during the day or try to help and I had to back to work close to a year ago. I would came home every day wondering what mood he was in. But the funny thing is not really but he would be so mad and start yelling of what I could understand and then sometimes he would throw things and then other times he would hit me it could have just been over what we were watching on TV or the remote control to him it didn't matter any little thing would set him off. Then about an hour later he was just fine like nothing ever happend and I try to talk to his family about this but they let it get so bad to where I couldn't handle myself no more. I think at time times I could have used counsling but didn't have the means to go and I am sure I can still use it now. But now his family sees 6 months after this has started how bad his attitude thru everything has changed. And I guess that is the hardest part for me is b/c of our little girl and he acts like he doesn't care about anyone but his self and it is hard to take care of someone that does not want no help. I get up every day saying its going to be a wonderful day then I look down at my little one sleeping like an angle and it just puts a smile on my face. Sorry so long just had to get some steam off my chest I feel better now will talk to everyone soon

Vickie
 

Al

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Hey Vickie. Just tell it like it is whenever you feel the need. we understand.
AL.
 

liz

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Does his behavior stem from the emotional lability that affects some folks with ALS? Is it possibly treatable?

Or maybe someone just needs to ask him how he'd like his little girl to remember him.

Just thinking,

Liz
 

CindyM

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I agree, Liz. Part of setting limits is to let people know, to the extent they can understand, how hteir behavior affects others.

Vickie- there might be a owmen's agency in your area that offers free or low cost support. If not, I hope you can find strong and caring folks who support your right to protect yourself. We are always here for you! Cindy
 
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