General For New Carers - Coming Here Out Of Desperation

[Nicolette]

I have been here for a number of years now and seen Carers come and go. Some of them have come here in desperation looking for someone to identify with and try and find a solution for the chaos they feel in their lives plus trying to understand what PTSD is.

For starters PTSD is a sometimes cruel and debilitating illness which can turn the loveliest person into a monster who you don't even recognise. It can send the lives of both people (the Sufferer and the Carer) into turmoil.

What I want to point out is this. Sympathy and tippy toeing around on egg shells does not help a Sufferer plus it pulls a Carer down to such a level where they lose perspective and begin to think that love can cure all or lose their self esteem.

Well, PTSD is not curable but it is manageable. The person who has to do this is the Sufferer and the best thing a Carer can do is support them but keep strong healthy boundaries. Being sympathetic and making too many allowances or excuses for behavior and labeling it as PTSD actually enables the Sufferer.

Quite frankly it becomes depressing to read how a Carer is suffering and when experienced members offer advice (which the new Carers are not yet ready to hear) and they go off threatening to leave the forum saying how we don't have any idea.

Think about this for a moment.......if I have a really good relationship with a Sufferer for almost 3 years now and Carers such as Amethist or ISupportHer have marriages which have lasted years then we must be doing something right. So, if we say something you don't like, before you go off running as you didn't get the sympathy you were looking for, perhaps sit with what was said and give yourself time to digest it.

I have followed the journey of many Carers and Frankie and Shoka both come to mind as they have learned that by using PTSD as an excuse for their Sufferers to get away with more they actually created a bad situation for themselves. It took them time but they then actually turned around and now understand what was being said to them at the start.

We are here to help and offer our experience....that is all we can do and it is up to you what you take on board. But when you come here feeling desperate and like your life is falling apart don't forget to give a second thought to what has been said to you even if it initially seems harsh.

 

[helena]

Hi Nicolette,

Not sure if something has happened since I have been away from the forum but I have always found the advice and support here phenomenal.

The information I have had from both carers and sufferers has helped me understand ptsd and, in particular, combat ptsd in a way that I could never understand from any other site or books etc.

Without Anthony's learning sites regarding recruit training and the ptsd 'cup' I would have continued to have been lost in the 'wilderness' regarding this condition.

My SO has been through a bad time recently (a result of the news programmes about Afghanistan I suspect) and I turned to this site for advice and guidance, not to family or friends because I knew i would be helped and told what I needed to know... You are absolutely right, carers in long term relationships like me do not need sympathy or pity and as much as we all rant at times and get down in the dumps, we basically need advice, guidance and sometimes, a good shove in the right direction.

I am incredibly grateful to you, Anthony and the people on this site for the help and support you have given me and I hope that I will, one day, be able to pay back all that you have given me.

 

[SunnyBrookFarm]

Nicolette-

As always thanks for your honesty. Some people don't realize that I am a sufferer and a carer. Before I was diagnosed recently - my daughter was diagnosed 4 years ago with PTSD. She was hospitalized within several months of her diagnosis. It was a tough time - believe me I understand. My 18 yr old beautiful daughter was falling apart in front of me.

I made all of the errors - you've mentioned and then some. I was tip-toeing around her, allowing her to mistreat me, giving 100% unguided sympathy - you name it - I did it. Then finally one day - I realized that SHE had to decide to help herself - all I could do was "support" her along the process.

Now - our relationship is wonderful. She still lives at home, has a job, pays her bills, and is open and honest about her feelings, triggers, and emotions. What changed? How I was treating her and the fact that I set boundaries of what I would tolerate.

When I give advice - I truly try to give it from both perspectives, as open and honest as possible.

 

[helena]

Hi Sunnybrook,

You have always given me (and other carers) good advice and that is probably because of being in the unique position of being both carer and sufferer.

 

[TLight]

As a sufferer I totally agree.

I want the people around me to have very healthy boundaries and call me to the floor if I ever use PTSD to treat them bad or I'm not owning up to bad behavior.

My Modus Operandi is to do the opposite most times. I have hurt so bad my whole life, I go out of my way to please, not hurt and sometimes this gets me in trouble. Luckily I have a wonderful carer now, so I'm not getting taken advantage of.

I do isolate, withdraw, etc when my symptoms are bad. Mostly because I feel shame for being 'weak' or depressed. But I expect my carer to call me to the table if my negative thinking is out of hand or I'm using my suffering in some way to gain sympathy.

I need love and caring. I don't need someone to see me as 'damaged' or the 'poor little thing' trip. That would only serve to make me sicker.

Thanks Nicolette for saying it like it is. I'm sure there's a lot of abuse going on out there that is unnecessary and doesn't aid a loved one at all. Unhealthy boundaries in any way shape or form will create sickness every time. It is sad and I know that it occurs and only magnifies over time...........usually with a very bad ending for both people involved.

 

[Pam]

I too knew that I would need help soon. My C and I have been together going on 5 years and the first 4 were a trial and error period for me. Then we found out about C's lung cancer and a very close mutual friend of ours died suddenly. We both went into tailspins. That's when I came looking for help. I am SOOOOO glad I found it here. Things have calmed down for me and I owe that to what I have learned here. Instead of "re"sponding, I am "pre"pared. I have been able to more clearly define who I am in our relationship, what I need, and what to expect. Kudos to the many posters here and the moderators. I sometimes see myself in others when they post emergency situations and I learn from that. I sometimes read advice to others and I learn from that. Great place to be.

 

[Frankie]

Well said Nicolette,

Having a happy and successfull relationship with someone who has PTSD is possible, as we can see from the members you have mentioned. As a carer you have to be prepared for the ups and downs that PTSD entails, however boundaries have to be set up.

New carers that come on the forum really should look at the advise given and see it as "tools" to be used in order to better cope with the "sufferer".

New carers should take advise from those that are having a great relationship and apply it to their own life, as you say Nicolette "we must be doing something right".

And also they should take advise from those like me that have made mistakes and have learned from them ...the most important one for me was using the excuse of my exbf having PTSD. I now see I was enabling his behaviors, over and over.

I have always supported him, always tried too much....and at the beginning excused his leaving, silence and withdrawals because he had PTSD, something I wouldn't have tolerated if I was with someone who didn't have PTSD.

When a new carer comes on the forum for information and advise, they should be prepared to truly listen and truly want to learn more about the disorder, and what better way to learn then from people that have had a relationship or are still going through it ?

I have stopped enabling him, this I did for him but especially for me. I wasn't in a healthy place....and I wanted to take my life back.

When my exbf left, I had great advise from a lot of people here, I didn't always listen....always thinking that love would conquer all....it doesn't always work this way. PTSD was why he left but not necessarily why he stayed away from the relationship, i can now see it. And even if he is living with an uncontrolled PTSD, there is nothing I can do if he doesn't want it.

PTSD played a major role in him leaving, he is now not the man I knew....I had no choice but to move on. This is something new carers coming here in despair really have to think about...."when is it time for me to move on" cause we know and a new carer should really understand is that no matter how much we try to help them, ultimately it is up to them.

We can't "push" them to stay.....we can't "force" them to be how they were.......so for our own happiness and welfare...we have to let go. This is something new carers have to realize.

PTSD is a cruel, dibilitating, unpredictable, and I often say "selfish" disorder....which takes a lot from the sufferer and carer. When I came here, I was at a very happy place...when he left and asked for advise, my first reaction also was "but you don't understand...you don't know him...we really love each other, he is a sick man" hmmmmm....all so true....but what I also realized was that the people that were giving me advise were people that really knew what they were and are talking about !

Frankie

 

[Frankie]

Again, I have been thinking of how I posted last night....often, I post depending on how I am feeling at the moment......this morning I can be more rational and would like to add a few more thoughts.

When I first came here....and like some other new carers, I was in the beginning of what was to become a great relationship with my now exbf....I came here for information and for a better understanding of the disorder.

For some others, after months, or years of having a great relationship, they come on forum because of their partner being hugely triggered and don't know how to deal with the new "loved one", so they come on the forum out of frustrations, for better understanding, guidance and yes, for the famous word "support".

When things are going good in a relationship....and by good, I mean, handling the every day PTSD "issues" that are the issues we know about and we expect from our sufferer ...then yes, it is easy to have a great relationship and easy to say we are doing and saying the right things.

It is a different thing when after months and/or years of a great relationship.....The sufferer becomes hugely triggered, and from one day to the other...becomes a complete stranger......This is something altogether different and that is why some new carers come on the forum distraught, in disbelief, frustrated, hurt...etc....and really not understanding what happened !! Yes, at a time like this it is very hard for them to listen to advise.....it takes time to register !

I always say "We can measure the worth of our relationships mostly when things go wrong, it is then that we truly get to know each other and our loved ones". How we handle things depend so much on the success or demise of the relationship.

Setting healthy bounderies, listening to the sufferer, understanding, support...are all requirements for carers in order to have a good and healthy relationship....but we have to always remember that the sufferer will have to want to do the same.

For some, the forum is the only support they will have when dealing with an uncontrolled partner. Some will listen quickly and apply what they learn....for some it will take longer...it hugely depends on what we the "carers" are willing to accept...and for how long.

If sufferer is willing to make the efforts and doing all the "right" things he/she has to do to make it work, whether controlled or uncontrolled....then yes, we continue supporting and continue being in the relationship....with all its ups and downs.

New carers should understand that loving and being with someone who has PTSD is not an easy journey.....very long and at times hard, challenging, frustrating...but also can be rewarding, happy and successful....measured in baby steps, day-by-day.....

They should also understand that love does not "cure" the sufferer...with support and understanding they can only "control and manage" the disorder...and the huge work will come from the sufferer himself.

Each one of us has a “timeframe” of what we can “endure” or “wait” for the person we knew "comes" back again….we have to realize that this might never happen and after giving our all…we have to make decisions that are the best for us.

New carers coming on the forum have to realize that advice given to them is given from people that are going through the same experiences and/or have gone through the same. The extra knowledge that they can get from our posts, is what will make them reach a wise and better understanding and can then make a healthy decision based on what is right for them.


Frankie

 

[amethist]

I found this forum back in February this year out of shear desperation. None of the professionals at the time would listen to what we were telling then of how my husband was feeling, acting and spiraling downwards pretty fast.

I was the one that screamed shouted and kicked doors down to make them listen, which they eventually did.

My husband and I have been together nearly 10 years and married for nearly 7. And even though he now has ptsd, which hit nearly 3 years ago we are still strong and solid together. So as Nicolette has said "We must be doing something right"' and no I do not walk on egg shells, it gets you no where.

I try to be as honest and as supportive as I can to anyone, what's the point in saying one thing when you know you really mean something else, it does not help them at all.

As carers you have to set boundaries, my biggest one is my hubby can be as ill as he has to be, but he does not wallow in self pity, or sit feeling sorry for himself. He has to put the work in and make an effort even if he is having a rough deal of it, just making himself a drink is putting the effort in if he is really bad.

We cares give the advice we do because we have been there and done that for so long, it's almost second nature. We still make mistakes, but we also learn from them still. We also value any ideas from new carers too, as they make know something that could help us.

Where would I be now if it was not for the support, advice, honesty and the roll on the floor laughs this forum has given me and still is, I would probably be living alone.

So please stop and think about what you are being told, it comes from experience and learning from others who have been there before us and passed on what they have learnt.

One last thing, You can make some wonderful friendships on this forum, with other carers who "get it".

Amethist

 

[Shoka]

Hi Everyone

I did come here looking for support and wisdom. The forum is not my only source of support, as I do see a therapist, but it has been a major part of my learning about the disorder.

Listening to others experiences and seeing how they related to my situation helped. It takes time to come out of the fog as a new comer to the site, especially when coming to the site in a state of desperation.

I've said it before in other posts and I'll say it again here, if you are a newcomer, and you read a post that doesn't sit right with you 100%, don't throw the baby out with the bath water. Keep coming back, try it for at least a month, stick with it and keep and open mind.

At the very LEAST, this site offers educational information that can not be found on the internet in other sites.

Like they say in the 12 Step groups- "Keep Coming Back, it works if you work it".

Shoka

 

[AnnieLloyd]

This particular post has been very beneficial to me. My spouse was very recently diagnosed with PTSD, but has been symptomatic for many, many years (we just didn't know what it was). I see now, knowing how NOT to treat a person with PTSD, the mistakes I made, walking on eggshells, giving him the utmost sympathy because I didn't know what was wrong...for a long time, I felt as if I had done something wrong. I am still learning about PTSD and don't claim to fully understand it yet. I am glad to know that eventually my husband will be able to make the same type of "efforts" as Amethist stated earlier.

Amethist you have given me such a sense of hope for my husband and my marriage, you have no idea how much peace that gives me to know that it CAN be done!!
Thank you so much for being here!!
Annie

 

[ISupportHer]

There has been a lot of good information in this thread. I will just issue a "Thanks" to all.

I guess the one thing that I keep thinking is that we all just need to focus on PTSD as the enemy, not one another.