So often I hear spouses of Veterans with PTSD refer to themselves as caregivers. This term drives me crazy. We are partners in this journey with our Veterans not just their caregivers.
A caregiver is someone that provides care. I often think about caregiver as a person that is hired to sit with someone that cannot care for themselves. A caregiver is someone that comes into the home and does things like laundry, fixes meals, bathes their patients. They are usually someone that an agency provides, and they have no emotional connection to their patients. They are there to provide a service. This is not to say that good caregivers do not develop an emotional attachment to their patients at some point, but it is not the relationship that a spouse has towards their partners.
A spouse or a partner on the other hand loves their partner and at some point, has made a commitment to spend their lives together. There is more to the relationship than just cooking and cleaning. There is should be an emotional attachment. There should be love. There should be some give and take. No one ever said a relationship is a 50-50 deal. It is to be for better or worse. Note I am not condoning physical or mental abuse here.
When we take on the role as caregiver, we inevitably take away our Veterans sense of self. Let’s say for a minute that your Veteran didn’t have PTDS and that the roles were reversed. You had something going on and needed help, support, and some form of care. How would you feel if your partner took away your freedom?
This happen to me when I got sick the beginning of the year. My doctors said I could not do anything strenuous. No carrying laundry up the stairs, no pushing a grocery cart, no vacuuming. Basically, I could do nothing. He did everything for me. I can remember standing at the sink washing dishes and he told me to go sit down. I looked at him and said that I could stand at the sink and do dishes. I could not deal with having everything taken away from me. I was grateful he was there and still is by my side. We know that I will have days that I cannot do anything, but we have agreed to let me do what I can on days I feel good and on days when I can’t he will do them.
I had to learn that even though I feel good there are still times we need to do things together. Last night was a prime example. I was having a good day and I cooked dinner and was cleaning the dishes while dinner was cooking. He came in and asked what he could do to help. I told him I had it. He looked at me and said, “I can do the dishes. We used to cook together all the time.” He was right. I was tryin so hard to hold on to my independence that I did not think about how he felt when we stopped doing things we used to enjoy together.
I wonder if that is how our Veterans feel when we assume the role of caregiver and stop being their partner. Do they feel we are taking their independence from them? Our Veterans have already given up so much. They gave up their innocence. They gave up a good night’s sleep without either having nightmares or having too much going on it their heads. They gave up enjoying fireworks without feeling like they are in a war zone. They gave up a simple trip to Walmart without having to check every entrance and exit. They are aware of where every camera is placed. They gave up a sense of security and are always aware of their surrounding, looking for the dangers.
When we assume the role of caregiver and stop being their partner, they lose that sense of closeness, love, and trust. All of these are needed to help our Veterans deal with their PTSD. When we step into the role of caregiver, we take away their sense of purpose. Then we wonder why they do not act like they love us or stop doing the things that we know they can do and get frustrated when they don’t. Maybe we should take a step back and become their partner again.
Many spouses find they must step into the caregiver role just to get things done. When there are vouchers, claims, recertification's and other paperwork that needs to be filed some Veterans put it off or choose not to do it at all. Failure to complete the paperwork could possibly result in loss of income or benefits, creating a financial burden on the family. So, the spouse steps in and gets it done. Scheduling appointments, follow ups and ordering medications may also have to be done by the spouse. When events like these happen, we become the caregiver.
There is also the endless list of things that must get done around the house. Laundry does not just magically disappear from the hamper or piles on the floor to the drawers all nice and folded. Meals just do not miraculously appear on the table and the dishes do not wash themselves. The kids have school and homework, they need baths and have other commitments. This leaves us feeling like our only job is to take care of others and we become overwhelmed and exhausted.
It is hard to become their partner when we do not feel loved or appreciated. There are times that the hurtful words, fits or anger, and possibly substance abuse make us develop resentment towards our Veteran. Over time the resentment turns into hate and we find ourselves asking why we are there and do they really love us. If this type of activity continues things will spiral further and further out of control until we end up in a loveless relationship with no hope of repair.
How do we get that partnership back and when do we know what role we need to be in? I wish there were an easy answer, but there is not one. Change takes time and work. A lot of hard work. Initially the work will fall on you. You need to remember that for every action there is a reaction. When we do not like the way things are going it is up to make a choice to change or let things continue to fall apart. I am not saying that we must be the only one to change, but the first few steps are ours to take.
Finding the Balance – First Step
Go back to the beginning. This is your starting over point. Take time to remember why you fell in love in the first place. What was it about them that you fell in love with? We have a reason that we fell in love with them. You need to find that reason again. It may be hidden deep behind the resentment and anger.
We did not take out an ad that said - I am looking to be in a relationship
with a Veteran with PTSD. They must have explosive moments and be
easily triggered. They should say hurtful things. They need to be a
hermit and not willing to go out in public. They must have a fear of
fireworks. They must love their Buddies more than me.
Exercise 1 – Why Did We Fall in Love
Remember when you first met. What drew you to your spouse/partner? Was it the kindness in his/her heart? Was it the smile, the laughter, they way you talked to each other?
When I first met my Veteran it was all the little things. I worked EMS and he would always send me messages like, have a good day beautiful. He would send me weather alerts if a storm was coming or tell me to grab my rain jacket. He would make my coffee and bring it upstairs while I was getting ready for work. He had the kindest eyes and a way to make me laugh. We would cuddle up on the couch and watch TV or a movie. I think he really had me hooked when one of the first movies we watched was Dirty Dancing.
Take time to make your list. Close your eyes and remember how you felt during each moment. Remember this is what you are fighting for.
I fell in love with him/her because …
Exercise 2 – Where are We Today and How Do I Fell
Here comes the tough part. Look at your current relationship and be honest about where you are today. This is going to take a lot of honesty and some courage. Facing things we do not want to face is always tough. You will find that there are mixed emotions. You may even have anger, resentment contempt or other negative emotions. As you look at your current situation you may begin to doubt yourself and question why you are even in this relationship. First it is normal for all relationships to have mixed emotions, even those without PTSD. Negative emotions do not mean that your relationship is doomed to fail. You are not looking at the entire picture.
I know that for us it was the fits of anger and rage. The snapping at the drop of a hat. The hateful things that he said. The lack of urgency is doing things (I have this get it done now attitude). The turning off. The pulling away. The simple disagreements that turned into a major battle. Facing these things head on was tough. I assure you there have been times that I have asked myself. Why are you still here? What did you get yourself into?
This is where we are today…
How does this make you feel? Are you angry, hurt resentful? Do you feel lost or like a failure? Do you feel sorry for yourself or your Veteran? It is important that you address your feelings.
I feel …
Signs and Symptoms of PTSD
The signs and symptoms of PTSD vary from person to person. There is no checklist with a magical cure for each symptom. Some signs or symptoms may take years to develop.
The DSM (Diagnostic and Statistical Manual of Mental Disorders) says that to qualify as having PTSD you must meet one of the following criteria.
1. Exposure to one or more events involving actual or threatened death, serious injury, or sexual violence. This exposure can either be direct (being there or witnessing the event) or indirect (finding that a close friend or family member was there).
2. Repeatedly reliving the trauma in the form of dreams, illusions, flashbacks, unwanted thoughts, or extreme emotional or physical reactions when confronted with a reminder of the trauma. Examples – people, places, things, smells, sounds, tastes, situations, emotional or physical sensations.
3. Avoiding or making efforts to avoid thoughts, feelings or conversations about the trauma or things that bring it to mind.
4. Trauma related negative changes in thinking patterns, mental abilities and mood, as evidenced by two or more of the following: highly pessimistic attitudes towards oneself, others and the world; memory loss regarding important aspects of the trauma; blaming oneself or others for the trauma due to distorted beliefs about its causes and consequences; ongoing fear, anxiety, guilt, shame, anger, or other negative emotions; lack of interest in activities that were previously rewarding; alienation from others; problems feeling love, hope, satisfaction, or other positive emotions.
5. Noticeable changes in reactivity and arousal due to the trauma, as indicated by two or more of the following: irritability and angry verbal or physical outburst (for little or no cause); sleep problems, reckless or self-harming actions; difficulty concentrating; constantly being on the lookout for danger, sensitivity to unexpected sounds, sights, smells, or touch.
6. Symptoms in 2 – 5 that last more than a month.
7. Symptoms significantly interfere with the ability to work, relate to others, or pursue other important aspects of one’s life.
8. The symptoms are not the result of medication, a medical problem, or substance abuse.
Other symptoms may include:
· Suicidal thoughts
· Survivor’s guilt
· Violated personal or moral beliefs
· Avoidance of thoughts, conversations and circumstances that may cause a trigger
· Lack of empathy
Exercise 3 – What Are My Veterans Symptoms
List your Veteran’s PTSD Symptoms. List as many as you can, even if they do not always display them. This is very important.
PTSD, Me or Him?
To assess if our feelings about our relationship are related to the PTSD, or are real relationship issues you need to establish how you feel about the signs and symptoms of PTSD that your Veteran has.
When you look at the list above think about how each makes you feel. Do they make you angry, resentful, compassionate, disgusted or hurt? Do they change the way that you feel about yourself?
Let me share a few of mine with you. My Veteran has a hard time sleeping. Sometimes it is from the images in his mind or how “wound” he is or his need to protect me. When we get up in the morning, I usually ask how he slept. His normal response is either on and off or I did not sleep. A lot of the time I feel guilty about him not sleeping. I know that because of my medical situation he feels that he needs to stay awake incase something happens to me in the night. Here I am snoring and sound asleep, while he is awake watching me. There are times I feel angry, because of the experiences that he had while in combat that keep him from sleeping. I get mad at the situation. There are other times that I feel so sorry for him that my heart hurts. I see how this lack of sleep hurts him and I want to make him better. I had to realize that there is nothing that I can do to fix his lack of sleep. At this point I need to remain in the partner role, not the caregiver role. I am just supportive and let him know that I love him.
Like so many other Veterans my Veteran must sit at a certain table in a restaurant. He cannot have his back to the door or window. When we go out with family or friends, I make sure that I recommend that we sit at a particular table and I usually say something like my Veteran, and I will sit here. This stops any potential embarrassment and him having to admit his PTSD issues. At that point I am acting as his caregiver and making sure that his needs are met. This situation does not cause any emotional reaction from me.
Exercise 4 – Compare Your List from Exercise 2 and 3
When you compare your list from exercise 2 and 3 you will be able to see if the things that are a problem or make you angry or upset are relationship issues or PTSD issues. Once you realize that many of the issues you face are related to PTSD you can now direct your negative emotions to the right place. You will soon realize that you are not necessarily angry, bitter or resentful towards your Veteran but to the PTSD.
When to be a Caregiver
When you look at your list from exercise 3 you will see that there are somethings that your Veteran may need help with. Sometimes it is a permanent thing other times it is temporary. Especially if they have a “Date” coming up or in treatment that requires them to relive their traumatic experiences.
It is important that you really analyze this list. Take the time to determine if they need a Caregiver, a spouse/partner to do this together or if it is something that they must do on their own. As spouses/partners we often do things out or love or convenience for our veteran when we are actually taking their independence away from them and making them feel incapable of providing or doing for themselves. This creates another symptom of PTSD or reenforces the feeling of inadequacy they already feel because of PTSD.
One of the hardest things that we can do as a spouse/partner is not “taking care” of our Veteran. Sure it is easier just to do the dishes or clear the table then ask for help. It may be easier to rake the leaves ourselves or take the trash out. We may want things done a certain way at a certain time and when it does not get done how and when we want, we just do it, causing further resentment from us and our Veteran, and forcing us to stay in the caregiver mode.
Becoming a Good Partner Instead of a Resentful Caregiver
Being a good partner is hard in any marriage or relationship. Love is the foundation and communication is the key. When we look back to Exercise 1 we can see the love. There is also the reassurance of that love because you are taking the time to read this and do the exercises. Now we need to focus on the communication.
Good communication is hard to come by. Often, we expect people just to read our minds. Here is a little tip, THEY CANNOT. Communicating with someone with PTSD can be challenging, but it can be done. It will take time and practice, Baby Steps, as I call it. You must understand PTSD and know your Veteran to develop good communication skills.
It has taken my Veteran and I months to get to the point we are now. We still fail at communicating at times, but our failures are a lot less often and our arguments are a lot less explosive. My anger and resentment are way down and his willingness to open up and communicate is better than ever. This is something we work on every day, and as our relationship evolves so does our communication. The one thing that I learned early on as a paramedic is that no matter how good a paramedic, I thought I was if I did not have a partner that could get us to the hospital I was of no use. It would not have mattered if I had a doctor in the back of the ambulance with me. I try to keep that mind set when creating a strong partnership with my Veteran.
Communication Skills 101
There are a few basic things to remember when learning to communicate with your Veteran with PTSD.
· Trying to communicate with them when they are in a PTSD moment is pointless. They do not have the ability to listen or comprehend anything you are saying.
· They already feel “damaged” or have low self so trying to communicate by assigning blame will only make matters worse. They need be accountable, but your approach is key.
· They cannot process more than one or two things at a time. Coming to them with a laundry list of things that need to be done or changes that need to be made is too much for them to process. It will also make them feel attacked.
· PTSD and military training cause them not to show empathy. When they had emotions while in combat people died. You cannot expect them to show emotions just because you want them too. They may have shown them in the beginning but as their love developed, they feel a deeper desire to protect us so they show less. You need to ask for what you want.
I made the list when I first decided to make a change in our relationship. I ranked the things that had to change and picked my top 2. The day that I decided to approach him I had a speech all worked out in my mind. The first thing I needed to do was find the right time to talk to him. At that time I was so worried about setting him off I walked on eggshells. I picked first thing in the morning. I knew that I could talk to him after a cup or two of coffee and a cigarette. When the moment came something told me to change my approach. Instead of just saying “I cannot stand it when you do this” I started off by asking him one thing that I did that triggered him. I limited it to one thing. I was not about to sit there and hear everything I did that was wrong. I had heard that enough when he was in a PTSD moment. After he told me what I did I told him one thing that I could not live with. We talked and agreed to try. I failed many times and I still do. The one thing that he asked me to do was not yell. I am a yeller and that was so hard for me. I soon saw positive results. When he did trigger or make me mad, I found that our conversations became more effective when I did not yell. I also saw that the times I did yell things went right back to that explosive behavior that I did not want. We spent a few weeks working on the first thing on both of our list. When I revisited my list, I found that other things that were initially on there were no longer an issue. We did this many times and we have better communication now than ever. I have added new things to my list and so has he, but they are no longer major things, and we are making progress. I have found that I spend most of my days as his partner and less and less time as his caregiver.
We will be doing a series on effective communication in the coming weeks and months. I hope this helped and remember that you are not alone. You have an entire community that has walked in your shoes at one point and we are here for you. - Stacy