How To Help and How Not To Help?

[Kathy]

I apologize if this question has been asked previously. As a family member, I would be delighted to read what all of you as persons with PTSD want from those close to you - your spouse, family, friends and co-workers. What are the things you really wish they would do, that would make you feel more happy and comfortable? What are some things you don't want, that irritate and distress you? I am learning constantly with my niece, what is helpful and what is not, though mostly through trial and error, which can be quite painful at times. It would be interesting and very helpful to hear other thoughts and needs. So do please share.

 

[Portabella]

That is a very complex question, because I am sure we all differ. But....learn certain triggers by trial and error and evade them. I have days that I can deal with alot more than other days.

If I get into a black mood, and my son continues to push me by talking back or being disrespectful in any way I can blow. Usually it is best to leave me alone and let me work it out alone. I will go bathe, or go to bed, or go outside, and that is my way of not hurting those I love. Let me go. My family is pretty good about this.

I have habits, I always have to have a leg or a foot moving. My Significant other used to call me "thumper", he had no clue at this time. Just this morning he got out of be and kindly and jokingly said, "you and that foot". I will hang my foot over the edge of the bed not to disturb others, but my foot is tapping. I think with me its all about nervous energy. I have to release it somehow, if not I can explode.

The list is long on this one, but....don't go where your niece does not want you to go. Don't tell her its going to be alright, I resist pity. I don't know what happened to your niece but remind her she is a survivor, and that is a feat in itself, it is a reason for praise.

 

[slhlilbit]

i agree with portabela.
everyone has diferent triggers. my son has grown up with mine and with his TBI i have had to learn that my son can be hurt by my feeling. he is very attintave to everyones feeling. He knows by my facial expressions when to back off. and i have learned to walk away. my daughter is the same way. she is more in my face trying to get me to tell her whats wrong and she helps me get it out and i her. My children have helped me servive this.:kiss:

 

[becvan]

I have to say.. the worst thing for me is getting anything thrown at me when I first wake up. If I'm asked any kind of question, or bitched at, or get bad news/good news.. I will snap. I just can't deal with it first thing. I need about an hour of peace and quiet to wake up and find an inner strength to deal with anything else. Getting out of bed was hard enough.

Also asking more than one thing at a time. It takes me half an hour or more to work through one question, throw two at me.. and not only can I not comprehend both questions or remember them but get quickly frustrated with all of it and very annoyed with the person chucking this stuff at me.. I hate getting overwhelmed.

Much much more.. but accpeting what may seem small to you but huge to us is vital.. I just can not stand hearing "get over it' or "it's nothing to worry about" or 'your making mountains out of mole hills".. They are my mountains and I don't give a crap if it's just a mole hill to you. Pet peeve with that one.

I could go one for hours.. LOL

So hope that helped some? Best bet is to discuss this with Evie.. she will know what she needs and what drives her up the wall better than us. We just know what drives us crazy.

bec

 

[Marilyn_S]

Hello Kathy,
I don't know if this will help much but here goes. Like the others have said everybody and every situation is different.
1.) If I'm having a hard time because of stuff that happened a long time ago and someone says,
"That was such a long time ago, sometimes the best thing to do is just let it go and leave it in the past."
OUCH! That really hurts! Sounds like they think I'm just asking for all the pain.
2.) If when I share something with someone I trust, then for several days afterward they avoid me.
OUCH! That really hurts! I start to feel like I never should have said anything.
3.) If when I'm talking to someone about my PTSD and they instantaniously become diagnosticians.
OUCH! That SUCKS! I start looking for the third eye in the middle of my forehead!
4.) If I'm talking to someone about my struggles with PTSD and they start getting uncomfortable but don't say anything,
That's bad. Because as someone with PTSD, I'm a bit hypervigelent regarding perceiving people's responces to what I say. Just be honest. Don't be insensitive but honesty is the best policy.

Hope this helps a little. Its kinda my own speal but I recon others feel the same way sometimes.
LUV & CARE
Marilyn

 

[Claire]

Acceptance is what I crave more than anything:

I cant stand:
'about time you got over it' comments
being made to feel like a freak
my triggers being ignored and being forced to go out on family occasions to places that are triggers for me
I dont need my mum saying 'you look tired' when I'm tired because of constant nightmares that I cant tell her about because I'd get the comment, 'about time you're over that isn't it?' in return! I need her to say, 'you look tired, are you having trouble sleeping again?" understanding not judging or criticising.

I need:
love, comfort, acceptance and understanding
I sometimes times need a hug. Its a really specific need to be held. Not for long but just enough.
If I'm in the process of tackling a specific trigger I need support, praise, gentle pushing, encouraging.
I need to be able to trust them, totally and openly. This helps with the guilt I feel about ....'not being able to get over it'!
My best friends are totally accepting, they dont put me in situations when I might get triggered, they are aware of them, but accept them and its just talked about matter of fact, I get to choose. I'm not made to feel a freak.

Hope this helps you, like the others say, everyones different. One of the best things you can do is build trust with your niece so she can express herself to you confidently and tell her what she wants and when she wants it.

Claire

 

[Kathy]

Thank you so much to everyone who's answered. It's very helpful. I suppose I should clarify however; although my niece is my main concern at present, I am interested in the experiences of others as well, not only hers. Even if some things do not apply directly to her I am grateful to hear them. Although quite honestly I could see Evie in every one of your answers. She has most of the same issues.

Don't tell her its going to be alright, I resist pity. I don't know what happened to your niece but remind her she is a survivor, and that is a feat in itself, it is a reason for praise.

I'm afraid I am quite guilty in this regard. I do often tell Evie things will be all right. Thank you for mentioning this Portabella, I will have to ask her if she finds it bothersome. As to what happened to her, her father murdered her family, killed himself and tried to kill her as well. She is known as "batgirl" on this forum.

Slhlilbit, I'm pleased your children have helped you. Children are wonderful aren't they? And family is very important in my opinion.

I have to say.. the worst thing for me is getting anything thrown at me when I first wake up. If I'm asked any kind of question, or bitched at, or get bad news/good news.. I will snap. I just can't deal with it first thing. I need about an hour of peace and quiet to wake up and find an inner strength to deal with anything else. Getting out of bed was hard enough.

This is one we've discovered the hard way. Evie detests any kind of talking at all for the first hour or so she's up. She also doesn't like to be disturbed right after coming home from the hospital or any other outing. She's very touchy at that point. I have asked her why several times but her reply is always "I don't know". I assume however that she needs to decompress after being out, as any outing is quite stressful for her. I have learned to not even say "hello" to her for about an hour after she returns home. Usually she goes straight to her room and rests, and we leave her be and wait for her to come to us.

I start looking for the third eye in the middle of my forehead!

This is interesting, Marilyn. What do mean you by that? Evie often talks about "going into her forehead" and watching everything from her forehead, although she doesn't use the word "eye". It's curious, we don't really know what she's talking about, and I'm wondering if what you're saying is something similar perhaps? And I agree with you completely Marilyn, honesty is the best policy. Although sometimes I think my husband is a bit too honest. :rolleyes:

I dont need my mum saying 'you look tired' when I'm tired because of constant nightmares that I cant tell her about because I'd get the comment, 'about time you're over that isn't it?' in return! I need her to say, 'you look tired, are you having trouble sleeping again?" understanding not judging or criticising.

Thank you Claire. Again, this is something we've learned through trial and error largely. Honestly my husband have never intended to be judgemental or critical, we ask questions because we care, but we have learned the importance of phrasing them differently!

Once again, thank you all. I very much appreciate it.

 

[Marlene]

Echoing what others have said and adding:

If you ask her what’s wrong and she doesn’t answer right away, it doesn’t mean she’s not going to. Sometimes it just takes a little bit of time to get your thoughts together and get them out. With me, if my husband asks me ‘what’s bothering you’ and I know I won’t be able to speak for a couple of minutes, I’ll tell him ‘hang on’ and he knows I’ll speak eventually…just not right then.

I know that sometimes a gentle hug for no particular reason makes me feel so much better.

Supporting her, being there and letting her know you’re there when she needs you.

 

[batgirl]

Well honestly I have no complaints Auntie... I think you are GREAT! You are so calm and have so much patience. Sometimes I wonder how you do it. The only thing I would change about you is, I would make you my mum instead of my aunt! :)

 

[paul]

i find if i get treated like a normal person that i can function better and feel that im not upsetting them, if they are happy then im happy,my life has been great the last couple of weeks because of this and im really hoping that it continues.

 

[mac]

The only thing I would change about you is, I would make you my mum instead of my aunt! :)

Kathy... that is a tremendous statement.

 

[becvan]

Kathy (and Evie when she reads this..LOL)

The third eye/ forehead comment. You asked what watching from her forehead could mean.. I have a pretty good guess at that one..

Third person mode. It's a form of dissassociation, one that I have severly. I see everything and remember every from a third person point of view. You will have to ask Evie if this is what she is experiencing for sure, but I suspect this is it.

With me (so as to explain this as best I can) I watch myself interacting or watching others. It's like I'm floating above myself watching all the events taking place. My memories are the same. If I recall what I did two minutes ago.. it's in third person. I know that I am feeling things and saying things and doing things.. but I'm just watching it all take place. I've been doing this for so long that it really doesn't phase me at all. I don't notice it at the time and others don't know at all either. It only bothers me in the sense that it isn't normal.. but I've learned so much on here that it doesn't bother me much anymore. I will either always be in third person mode or I will someday learn how to interact and remember in a self view.

It can give self control a run for it's money though. It can be very difficult to not blow up at people and act like an ass when everything is so remotely connected. It's tricky and I don't always succedd at it..

Anyways, that is what I think.

I thought it was interesting that Evie has the same morning issue as me. I'm also horrid if I just walk in the door from doing anything. Don't ask me anything, come near me, breathe on me etc.. I just end up flipping out.. I can't deal with it. I like the word decompress.. hehe that is it too...it describes it very well...

bec