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Lynn555

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Hi. I don't know if anyone can help me with this, but it's very upsetting, and I just really need a place to air this.

My mother has PBP. She's had it for 8 years now, and she still can eat soft foods and swallow okay. Her main problems are speaking (non-existent now) and chewing (difficult).

The problem we are having now is that recently she has started falling. She has fallen three times in the past few weeks. She said that she doesn't think it's weakness in her legs, she thinks she is losing her balance (although I'm not sure if she would be able to tell the difference). We spoke to our ALS case manager and the ALS support group that we go to about this. Everyone agrees that she should get a cane or a walker so that she is more stable in order to help prevent future falls.

This is all well and good. However, the real problem is her husband (my father). On the way back from the support group meeting today, we stopped at a drug store, and I told my mother that I wanted to look at the canes there for her, that it was a good idea to be prepared and to be safe, and she nodded. I went over to the selection of canes, and there was a really nice one with a very comfortable handle with the foam around it, it was very sturdy, and it had pink roses on it. My mother liked it. She walked around with it a little bit, it was very comfortable for her, and she decided that she would get it.

Now enter the real problem. My father flew into a rage, from the minute I said we would look at the canes. When I first was looking at the canes, he kept YELLING VERY LOUDLY to not get her a cane, that she doesn't need it. I calmly said that she needs to be safe and that we just want to support her, and he just got louder and angrier, so that the entire store was now watching and listening to him, yelling at me not to even look at the canes. Then when I was trying to ask my mother if she liked that pink one, my father kept physically getting in between us and blocking me and not letting me near her or even see her, yelling and screaming to get away, and he then got even more aggressive, both verbally and physically. He started loudly verbally attacking me, telling me that I'm trying to make her sick, and screamed at me, "YOU'RE TERRIBLE!", and he lunged at me to physically assault (hit/beat) me (this is not the first time). I brought my arms up to protect myself and quietly said, "don't you dare touch me." He then brought his arms up, made fists, shook them over his head and in my face and VERY LOUDLY screamed, "COME ON, THAT'S WHAT I WANT, YEAH, LET'S DO IT, COME ON!" :evil: I walked away.

I think the bottom line is that my father is in denial about my mother - he's in denial about her illness, about her needing help, about her falling, about her needing support. And anything that threatens that denial gets a response of incredible, intense, rage. So my poor mother gets no support from him. She gets nothing from him but anger. And she gets no cane.

So I can understand it, but that doesn't help her. The end result is that she did NOT get the cane that she liked and wanted and needs, because she is allowing herself to be intimidated by a controlling, angry, violent, irrational jerk who does not have her best interests at heart. And she puts that over her own health, safety, and well being. And there is nothing I can do about that. Even if she really hurts herself with her next fall, she may reconsider, but he will probably angrily "forbid" it.

I told my mother that she should go back and get the cane herself, that she needs it for balance, for her own health and safety and well being, and that it's her decision, not his. But I doubt she will.

I don't even know how much I can still help her anymore. My father is violently stopping me. I think the only thing I can do is back off and give them space. But that means my mother has no support whatsoever, and her health and safety is still at risk.

Has anyone ever dealt with anything like this before? I don't know of anything else that I can do. :confused:

Thank you! (Sorry this is so long!) :oops:
 

CindyM

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Hello Lynn. Wow. Heavy load for you! I am not sure I would be so calm and understanding if one of my parents was so uncooperative about the other's medical needs. You are right to think in terms of emotional support for each of them. I wonder if your Dad always reacts to change and stress with anger or it this something new for him? Regards, Cindy
 

emjoi

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I've seen with other couples that there can be that feeling that the sufferer "Isn't Fighting Hard Enough". That if they somehow tried harder, they could fight off the disease. That they are giving in and letting the disease win.

Which of course just isn't the case. This thing just does what it does, fast or slow, according to it's random whim.

And there's all that pent up frustration that wants to be released somewhere....

Somehow he has to learn that your mum doesn't have control over this.
It's not her fault.
 

Christa

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ive been thru what you are going thru and i know how difficult it is.my dad was terrible
 

Lynn555

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thank you

Thank you to all of you, I appreciate all of your responses. Just to update you, my father called me today and apologized. It is nice to know that he realizes what he did was inappropriate, but I know that it will happen again and again because he won't change.

Cindy, thank you. This is not new for my father. He has always gotten enraged since my earliest memories. He reacts with rage whenever he feels his authority or control is threatened. I think his main problem is 2-fold: 1) he is in denial about her illness and anything that challenges that denial gets met with rage; and 2) he needs to be in control, and anyone who does anything other than what he wants or thinks gets met with rage. He is like a 2-year-old with no emotional self-control. He has always been like this, and he will not change. But it's my mother who is on the losing end of this, and that's what bothers me the most.

However, he has now apologized. I told him that I am most concerned about my mother, and he said, "Why?" Still in denial! I told him that her balance is off and that she needs a cane. He then said, "okay, she can get a cane," like he's giving permission. But that's okay, as long as she can get the cane. So that crisis will be resolved, but I know it will come up again and again.

In the meantime, my brother and I talked and would like to get a medical power-of-attorney over her medical care so that we can help enforce her own decisions about what kind of assistive care she wants and doesn't want (vent, C-PAP, peg tube, etc.). This forum has been so helpful and enlightening, and I realize that it's a personal choice for everyone, and that the PALS has the right to make their own decision about all of that, and I will honor that for her. I know my father would not, so we would like to get the medical power-of-attorney. Does anyone know how to go about doing that? Has anyone else here done that?

Emjoi, thank you for the thought, that's a good point. But I don't think that my father thinks that my mother needs to try harder. I don't think he even admits that she has the disease at all. He really has his head buried in the sand. He's always been like that.

Christa, I'm so sorry that you've been through the same or similar things. It's so awful! I'm sorry anyone has to go through this! Dealing with the illness is bad enough! Why do family members have to make it worse? :evil:

Thank you all so much, you have all been so very helpful and supportive! I love you all! Thank you! :)
 

Raina

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PALS
Country
AU
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Western Australia
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Bunbury
Hi Lynn,

I am so sorry for what you are going through with your mum and your Dad's total denial. You are one tough lady! I think it is a great idea for you to get Power of Attorney for your mum. I've got Power of Attorney with Dave, not medical (I will have to look into that). But it sure helps with other things. I can now go and bank cheques in his name without being hassled by the bank, I can and do all our legal stuff without even having to bother him now.
Hang in there girl, your mum is very lucky to have such a wonderful support in you.
Take Care.
Raina
 

hboyajian

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Hi Lynn, I don't know the whole situation, but I have some thoughts. Is it possible for you and your brother to spend some time with your mom when your father isn't around to find out what she wants. I think she would need to choose to sign legal documents to give you medical power of attorney for herself. If your father is abusive of her ( I don't know if this is the case, but his reaction to the cane seems rather extreme) maybe she needs to evaluate her options for safety and might consider a different living arrangement. She is very vulnerable physically and emotionally with this medical condition and possibly could need counseling to help her make such serious decisions one way or the other.
 

CindyM

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Hi Lynn - I think you are on the right track with the Health Care Proxy thing. I like the idea for 2 reasons. First it solves an immediate problem but it also gives you and your brother and Mom a sense of control over a scary situation. Having a say over even something little will increase her self esteem and do better than any meds the docs can prescribe! Good Luck. Keep us informed! Cindy
 

Lynn555

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Dec 22, 2006
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thank you

Thank you all for your input. Yes, I think getting the medical power of attorney is important. I'm going to have to talk to my mother and see if she already has a durable power of attorney over healthcare in a will or trust or something. And I'm going to have to ask her about an Advance Directive so we can follow her wishes. So I'm going to have to have a serious talk with her. It will have to be without my father around. That can be difficult. But I'll have to do it.

Then she is scheduled to go to UCLA (I think in March) for further evaluation by a neurologist who specializes in ALS patients. I asked her if she would like me to go with her so that there is someone else there to ask the doctor questions and be able to hear what he says. My father has no medical background and is an idiot. My mother will be overwhelmed and it will be hard for her to absorb what is happening. So it would be good for me to be there. When I asked my mother, her eyes lit up and I could see that she was about to say yes, when my father loudly declared, "NO, I'M TAKING HER!" He feels so threatened, like I'm taking control away. All I'm offering is another level of support. Anyway, I'm going to bring it up again and try to go with them.

I don't think my father is physically abusive to my mother at all, so I thinks she's safe at home with him. He does not get as enraged with her because she backs down. I stand up to him, so he gets more enraged at me. So I believe she's okay at home. It's just that he does not meet her needs, because he doesn't bother to look and see what she needs. He just keeps his head buried in the sand and pretends there's no problem.

Thank you everyone! I'll keep you posted! :?:
 

manfred

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May 15, 2007
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PALS
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CA
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quebec
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pierrefonds
abusive reactions

Hi folks ,Just a general opinion...sorry to hear some of you are having difficulty with one parents reaction to the other's condition.Perhaps there's something else at work here!It's called fear of the inevitable...your father may just be horribly afraid of losing his life's partner!Obviosly he's not really accepted your mother's condition and every thing that in any way proves the onset of the inevitable "next" phase ..probably scares the heck out of him !If he accepts the cane he will perhaps eventually have to accept a wheelchair,artificial airway ,feeding tube etc.....although I pray the Lord your mother may never have need of these things..the possibility exists..if one accepts one possibility then the others may follow and that may be the basis of your fathers reaction!First the Cane ...then what?Perhaps if he was always more of a demonstrative personality it may explain his belligerence towards you...his way of coping as well as making you the target for "pushing the inevitable to the forefront"This condition is after all hard for anyone to understand,including the specialists,so I guess no one really knows how to react when we are hit with the news that our loved one has been diagnosed with this condition.Maybe your familly (including someone on your fathers side..a brother, sister or cousin) should get together with you (your brothers and /or sisters) and your mother and father with your mother's doctor and have him explain exactly what your mother is facing and how there is much that can be done to ease your mothers situation and make life easier for her..with everyone's help!Strength and positive atmosphere are so important in the fight against this illness!Hope you guys can work this out,...I think the 'husbands " concerned also need help..if they are to be any help to their spouses.It's probably easier said than done ..but don't give up on your father and definitely if you do have to "go it alone "don't give up on your mother!Stay in the picture!Manfred.
 

brooksea

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Hi Lynn,

It's amazing what kinds of emotions ALS can dredge up! Sorry to hear you are having to deal with such a frustrating problem.

Would it be possible for you to "meet"your Mom & Dad at the UCLA clinic? Perhaps you could call ahead and speak with the Social Worker and explain the difficulties your DAd seems to be having accepting the decline in your Mom's health. Then they could be prepared to maybe help him transition to a level of caring and acceptance. I'm sure it wouldn't be the first time they've had to deal with such a problem.

Hope things get better for your MOM!

cj
 
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