General Bridging The Gap Between Carers And Sufferers

[Nicolette]

I have been thinking that an information thread on how we as Carers have/can bridge the gap we have with our PTSD Sufferers would be useful as a tool and helpful to new members desperate to be helpful and supportive.

This thread's aim is to list things to help/remind ourselves of on what we can do to bridge the gap.....we can't fix them but we can be supportive. Let's brainstorm and see what we come up with.

Things I can think of are:

• Learn as much as you can about PTSD (this takes time)
• Listen to what a Sufferer is saying and not what you want to hear. Eg If they say they need space they mean it and that does not excluded text messages and phone calls to see how they are as tempting and desirable as it is
• Watch for signs...you can learn to see things and assess how your reactions impact until you find one which is positive
• Look after yourself as No.1 as you are no good to anyone if you are a wreck yourself
• Learn to communicate in a short but concise way when they are ill - find a word or a sign that they can use to let you know to give them some space without it hurting your feelings. It helps me to think Anthony is sick during his PTSD times so I simply just ask him if he is sick. I usually don't get a yes answer but I do get a no when he is not so there in lies my answer. Find what works for you.
• Respect that the illness is a daily struggle and cannot be fixed by you
• Always act out of love
• Set firm boundaries and stay strong with keeping them enforced
• When a Sufferer is well, help them understand how they could possible help a little to make the isolation and withdrawal process better for you and explain (short version) how something they do hurts you so they can try to respect you too....it takes time
• Teach them how they can help you. Eg. If Anthony gets sick during the day while I am work he will send me a sms telling me he is not feeling well. This then lets me know to not come home and dump my day on him and to have low expectations like I may have to cook dinner as he usually does that. I then don't get cheesed off at him when I come home and nothing is done as I have an understanding before I walk in the door
• Politely and 'picking your moment' point out things which you can see which change their behaviour for the worse from your viewpoint. Let it sink in and don't turn it into an argument. Eg "did you realise that when you do this then 'x' happens to you or your PTSD gets worse etc
• After something has occurred and things are back to 'normal' you can bring up things which you can see as points for a Sufferer to work on eg "When you were doing this I noticed blah blah... were you aware of that?". Don't push it but again, just give them time to process what you are saying.

That's it for me for now.......please add your thoughts.

 

[AdamAnt]

All good points. I think my problem might be that sometimes I'm afraid of "spoiling the bliss" of time she's not so effected. I need to find the right approach.

 

[Jade-]

If they say they need space they mean it

I hope it's ok to post here....

How can a sufferer get a carer to give space without seeming hurtful or uncaring? I worked all day yesterday, had anxiety, flashbacks,etc. on top of working my ass off. By the time I got home, I just needed to be left alone. Hubby hadn't seen me all day, as he works a different shift than I do. He wanted to spend time with me and was insisting. I finally gave him a choice..either I go to the bedroom and be by myself for the night or I sit with him and just be a bitch and end up yelling and fighting. I told him I loved him, but I just needed time to myself. He chose for me to go to the bedroom. I feel bad about it, but I HAD to have my space.

How can I get my point across without sounding so mean? How can I get him to understand that sometimes not spending time with me at all is much better than being around me when I'm in that mood? And what does he need to do to stop taking it so personal?

 

[cherryblossom]

I think perhaps you need to have a discussion between yourselves, when you are feeling 'well'. You need to try to explain why you need to be alone, and also reassure him. Maybe something along the lines that 'I need to be alone, but I promise to call you, if things get too much for me.' And also maybe a little warning in advance, like Nicolette mentioned. Maybe a text before you get home, telling him you've had a shit of a day, and will need some alone time later. That way he won't expect too much when you get home.

 

[Grandpalw]

As a carer, and probably a carer with an excessive need for emotional and physical affection, the situation you decribe has taken me 28 years of marriage as I am just now beginniong to come to an understanding of this need for space and alone time. I for all those years took this as a sign she didn't want to be with me, translated to she doesn't love me. I still daily have to remind myself of this. This forum has helped me gain more insight to our relationship struggles than years of counselling has accomplished.

I can almost feel the pain of your husband, but I am trying to come to terms with the sufferer needs as well. As for an answer to your question, 'How can a sufferer get a carer to give space without seeming hurtful or uncaring?', I wish I had that answer. I know my wife has tried everthing to explain her need to me but I failed to comprehend it. Still don't completely, but am trying.

Has your husband studied PTSD or read this forum. Since I have been studying PTSD, which includes this forum, I have backed way off of my wifes space, and amazingly, though not as often yet as I wish, she is coming to me, emotionally. What a difference, instead of the tension and stress that I was inadvently causing, there exists more openess and affection. I just hope I can keep up my part in this and not fall back into my prior destructive behaviors.

 

[Ladyhope Somerset]

Here's a couple of contributions - one positive and one I could do with some feedback on please!

It was through my GP that the penny finally dropped when he told me "men in general don't know what women want". I need to be hugged and receive a kiss now and again from my husband and I managed to find the right time to let him know. We now make sure we hug each day and he can just about take the joke if he forgets. :-)

Recently we had a near disaster. When I got home from work hubby was in bed (he never goes to bed during the day), foam was around his mouth and I couldn't rouse him. Called emergency services. First thing I thought was he'd had a stroke. Then I saw the tablets on the floor and the jug of water. He ended up on Intensive Treatment ward. Why hadn't he been able to let me know how he was feeling? When I asked him, he told me he has no recollection of that day. He probably doesn't want to remember it.

In hope. x

 

[Nicolette]

I finally gave him a choice..either I go to the bedroom and be by myself for the night or I sit with him and just be a bitch and end up yelling and fighting. I told him I loved him, but I just needed time to myself. He chose for me to go to the bedroom. I feel bad about it, but I HAD to have my space.

How can I get my point across without sounding so mean? How can I get him to understand that sometimes not spending time with me at all is much better than being around me when I'm in that mood? And what does he need to do to stop taking it so personal?

Jadebear, if you are only doing this occasionally I don't think it is something to feel bad about as we all have our bad days - PTSD or no PTSD. If it is happening regularly then it is something which needs work.

When I first met Anthony he could spend a week in bed at a time and now it happens very rarely but I have learned when to leave him alone so now he sits on the couch. By him sitting on the couch and me being in another room for some reason doesn't feel as personal as someone in the bedroom with the door shut. Sometimes I itch to go and talk to him and other times I want to go and sit with him. Sometimes I take a risk and go sit with him and other times I know when to definitely stay away.

My suggestion for you is to perhaps considering a compromise with your husband. I would firstly like to suggest that you let him know before you walk in the door that you have had a bad day so he has time to lower his expectations. I mean, you have to admit, it is nice knowing someone can't wait for you to get home and be with you.

The next thing I would be asking you is why you feel that your bedroom is more alone than being on the couch and why being on the couch would lead to you being a bitch? I know for a fact that two people can be in the same room but be worlds apart. Is it physical, do you feel pressured to talk or touch when sitting on the couch with your husband etc that pushes you to the bedroom?

To me as a Carer, I would give anything to have Anthony sitting beside me watching a movie, knowing I had to shut my mouth, than him being in the bedroom and me sitting by myself. I would suggest you need to work out how you can make a step closer and how your husband can take a step back so you both feel ok rather than totally shutting out...if that is possible? I'm no expert but these are my thoughts to dismiss or do with what you like.

 

[Jade-]

I would give anything to have Anthony sitting beside me watching a movie, knowing I had to shut my mouth, than him being in the bedroom and me sitting by myself.

Really? I would assume that most people would rather not have someone around if they have to keep their mouth shut or walk on egg shells. So I assume my husband would be better off with me in the bedroom with the door shut. Maybe I will try just sitting on the couch with him next time I feel that way.

I try not to do it often, but I do. It's not that I feel like I have to talk or touch if I sit with him. Sometimes everything feels too overwhelming. Lights, sounds, smells, just everything and anything is too much for me. Even the fact that he's male.

Thanks for your input, I guess I do totally shut him out without thinking about his feelings, only my own.

 

[Nicolette]

Maybe I will try just sitting on the couch with him next time I feel that way.

Good for you....all you can do is try and see what happens. Still make sure hubby knows you are not in a good mood and that you just want to sit with him as then he won't make the mistake of overstepping your need for space consciously.

 

[justme]

The problem I mostly ran into was communication breakdown. He wouldn't tell me when he was in one of his "moods" and didn't feel like talking or hanging out. I asked him a couple of times if we could talk about things the next time he felt better, but that never happened either. So how as a carer are you supposed to overcome this obstacle? All the ideas stated above in the previous posts sounded great but if both people are not willing to at least try and find some sort of common ground you're back at square one again.

 

[Cynthiatoo]

I am the one with PTSD but I think this can be used for any couple. I have been in my relationship for 18 years now. Third marriage. When we moved in together I didnt want to compromise on having 'space' because I really had loved having my own room and not sharing it with someone. Since then I have had my own room. Not really for any other purpose than to have something just to call my own. I keep all my clothes in there, a little old fashioned bed, a dresser and my makeup. Basically, I sleep in "our" bedroom, but all my stuff is in 'my" room and all my husband's "stuiff" is in his. We both just call his room "Our bedroom".

I think it is very very important for a man to have his own space. That's why men love to have a shed. haha. It's a primal thing, PTSD or not. Anyway, I dress in my room and can put my makeup on (colour my head in) and come out and go "ta da".

The way I managed talking about having my own room, was to reassure him that it was a good thing for both of us. When my son first died, I did sleep in there often, but for the past five years, it is very rare. I make sure I just say that I need a deep sleep tonight and I make sure that I think of it that way and see past my initial thoughts of "I just want to live by myself and
never worry about having cellulite or communicating to a male ever again".

Oh yeh, with guys, I think it is also important that they have a room that has their decorating stuff. No roses and frills etc.
I once read a book called Secrets About Men That Women Should Know by Barbara de Angelis. It was very helpful in learning what stresses a male and how to make communication easier. Simple things such as when you do a "we need to talk" you tell them first it is not serious and tell them how long the talking will go for. Sounds a bit like BS I know but the practices are great for reducing anxiety.

Basically, I believe that all couples need to have their own space and I mean a physical space they can make a mess in, put their crap in, go to, potter around or just be a vegie in. It can be as simple as putting an old TV and a chair in the shed or under a high set house.

 

[Nicolette]

if both people are not willing to at least try and find some sort of common ground you're back at square one again.

That's a given! The point was a thread with ideas for Carers. We all know that if a Sufferer is not willing to work on themselves there is little a Carer can do.