Spotlight on Women's Health
An Interview About Post-traumatic Stress Disorder: Rebecca McCoy
October 31, 2014
Rebecca will be the first to tell you that there's no predicting the way life will turn out, especially when your partner develops a mental illness. But living with someone who has a mental illness doesn't mean life can't be fun and fulfilling — it's just different.
This is the case for Rebecca and her husband Craig. Craig is a military veteran with post-traumatic stress disorder (PTSD). Although it affects their lives every day, they're making it work and want others to know they can, too. Read our interview with Rebecca — a spouse and a caregiver — to learn more about living with someone with PTSD.
Rebecca McCoy lives in Florida with her husband, two children, two dogs, and a cat. Not only is she a spouse, she is also a mother of two, stepmother of two, and caregiver. She enjoys writing and sharing her experiences with PTSD. She wants to help others who are living with PTSD. She shares her story at www.aspousesstoryptsd.com.
Q: How long have you and Craig been together?
A: Craig and I have been married for 11 years, but we have known each other for 25 years. We dated for just over four years before his military career. We separated but remained friends throughout the years. Both of us married other people, had children, and divorced, after which our paths crossed again and we married.
Q: Were you familiar with PTSD before Craig developed it?
A: No. I actually had not heard of PTSD before the U.S. Department of Veteran Affairs (VA) told us about it and officially diagnosed Craig with it in 2009. It was related to military traumas. At Craig's time of discharge from the military in 2005, he was diagnosed with conversion disorder. Conversion disorder is a mental health condition that causes physical or psychological symptoms that can't be explained by a medical evaluation. These symptoms can include paralysis or weakness, episodes of unresponsiveness, difficulty swallowing, and blindness or hearing problems. He was also diagnosed with West Nile virus, cognitive dysfunction, and memory loss. He had tension headaches that over time turned to severe migraines, and there are a few other physical medical conditions not related to mental health.
When we were told Craig actually had PTSD in 2009, all of his symptoms started to make more sense. As I researched PTSD, asked tons of questions, and learned more about it, it became clear that Craig had PTSD all along. It explained the other symptoms.
Q: Can you tell us a little bit about your experience with PTSD?
A: Where do I even begin? PTSD changed life not only for Craig, but for our entire family. It quickly became clear that I needed to stay at home with Craig full-time. I owned my own business and had to close it. I could no longer manage the business and take care of Craig at the same time.
PTSD is challenging. There is no other way to say it. It has the nickname "roller coaster" for very good reasons. Each day is different. You don't know if it will be an OK day or a really rough one. Craig has experienced almost every aspect of PTSD, and I have been by his side for all of it.
Craig and I learned to work as a team to manage his symptoms. Good communication skills are a must. I have had sleepless nights spent grounding him from flashbacks and helping him cope. I talked him through anxiety, down from anger, and back up from wanting to die. I experienced it all and everything in between.
Q: What symptoms does Craig struggle with?
A: Every day Craig has PTSD symptoms. He struggles with memory problems and cognitive dysfunction, similar to someone with Alzheimer's disease. Every night he has nightmares, sometimes multiple times in one night. When he does sleep, it is restless.
Because of emotional numbness due to PTSD, he has loss of feeling and connection with others. He avoids places, people, friends, and family members we know well and used to enjoy spending time with.
He has high levels of anxiety and it makes him sweat a lot and always feel hot. He always stays alert, checking on door and window locks, noticing everything and everyone around him. He has triggers that can lead to flashbacks or dissociation. He also has depression.
Craig also usually has anywhere between two and five migraines each week, leaving him unable to function.
Q: How has Craig's diagnosis affected your relationship?
A: The million-dollar question. I will not say our relationship is bad, because it's not. It just changed when PTSD became a part of our lives. The close emotional and physical relationship we used to have did change. In ways it faded, even though we love each other dearly.
Craig has to focus on himself a lot in order to manage his symptoms for his own health and well-being, as well as to keep his symptoms from affecting others. His focus used to be more on me or us, but it is something that had to change for the best interest of everyone. We do not have date nights, as many people call them. If we have a day where we go out, it is during off hours and to places that are not crowded. This helps prevent triggers from happening as much and helps Craig's anxiety stay as low as possible.
We both used to be social butterflies and enjoyed being around groups of people. For the most part, it's now the two of us and our families. Things we used to enjoy together as a couple, such as traveling, are not possible at this point. I can say our relationship has grown in the sense of trust and knowing we can always count on each other.
I think the hardest part of PTSD that changed our relationship is the view of what a relationship itself is. PTSD makes it very hard for someone to have a connection with or feel close to another person. That can cause both people in a marriage to feel lonely sometimes. For somebody with PTSD, emotions and feelings become something that requires effort and not something that just happens. You really have to make one-on-one time for each other, even if the feelings may not be there at the moment. As a doctor once told us, and we found it to be true, "Motions lead to emotions." Motions mean not only in a physical sense, but any type of emotional connection in a relationship.
Q: What does Craig do to manage his symptoms?
A: Craig sees his mental health doctors on a regular basis, even when he does not think he needs to or if he feels like nothing is helping. Time has proven that these appointments are important to maintain. Every day he uses coping skills such as breathing exercises and meditation — music is a favorite. He does try to get outside, and that is something he continues to work on. Given his daily PTSD symptoms, he has been diagnosed with slight agoraphobia, meaning he only goes out when it is a must-do outing. We have a boat that he uses as a hobby, a reason to get outside. It gives him something to work toward, as well as to give back a part of what he lost. He has goals that he set for himself that are very important for his self-esteem and self-worth.
Q: How are you involved?
A: I am Craig's wife, but I am also his full-time caregiver through the VA's Family Caregivers Program. I basically guide him through each day, do things that he cannot do for himself or help him complete the tasks he cannot finish on his own. I am his primary emotional support, the person who he can talk to openly. I also help him realize and remember that he is worth the fight PTSD brings.
I attend all of his doctor's appointments with him. I am his advocate. I monitor and keep track of medications, symptoms, and vital signs, which is extremely important due to his medications. I communicate with his doctors and work closely with them to provide information and updates on symptoms, as well as his everyday life. I am a part of his treatment team so Craig's treatment plans can work. I also help him remember the things he is supposed to work on at home each day.
I handle all of the family's finances and schedules. I prepare all meals and make sure he eats and drinks fluids. Due to his cognitive issues, he does not associate hunger with the need to eat and will not feed himself, as one example. I help him with recognizing symptoms when they start, something that he may not recognize. Then walk him through — and many times will do — coping skills with him. I also give him correct medications, which can help with those symptoms.
One of the largest things with being a caregiver, other than the obvious must-do things each day, is making sure that he does things for himself. It is really easy for a caregiver to just take care of everything, but that may not be healthy for either person. There is a huge difference between caring for and controlling someone. The line has to be defined and adjusted, as needed. It helps the caregiver from becoming overwhelmed, and it helps the person with PTSD maintain their self-esteem and self-worth. Just because someone has PTSD and may have limitations, that does not mean they are not capable.
Q: Being a caregiver can be challenging. Do you do anything special to take care of yourself?
A: I have a motto I live by: “You have to take care of yourself in order to take care of or help another.” I learned the hard way. No one, not even the strongest of people, can maintain their own balance 100% of the time if they do not make and take time for themselves. I take respite time, normally once a week or once every other week. My adult son or another family member takes care of Craig so I have time to do things for myself, take care of things I need to do, and just to be able to get away from the house and out into public.
I have my dogs, whom I spend time with. I maintain their training, and they give me another reason to get outside time. I have a pond that became my hobby. I take time outside to work on the pond garden. The fish are fun and relaxing to watch. I like decorating and working on projects inside on days that outside time is limited. We live on a lake where wildlife is plentiful, always something different to see, and I love taking photos of the wildlife. That has become a hobby of mine, too.
This is the one everyone laughs at me about, but I buy myself flowers once a month. Nothing expensive, just a simple bouquet of flowers to add an extra smile and fresh, relaxing fragrance to the house. And what I seem to be known best for these days is writing. I love to write. It is a way of expressing myself, sharing what life is like, as well as communicating with others that understand or are learning about PTSD. Reaching out and sharing our life with others was one of the best things I have ever done for myself. It really has become a therapeutic support group for everyone, including me. I have a PTSD website and Facebook page (A Spouse's Story PTSD).
Q: What have you found that helps you get through the bad days?
A: I use the same coping skills the doctors taught Craig. I use breathing exercises, mindfulness meditation, relaxing music, and I take some time outside, if possible. I also have a wonderful group of people online. We provide support for each other, and I always have family members that I can call anytime. If I need professional help, I know and accept that it is just a phone call away. Even though I am not the one with PTSD, spouses need to know that it is okay for them to reach for help too!
Q: What advice would you give to others who are living with someone with PTSD?
A: PTSD does not own either of you; it is just a diagnosis! Life does change with PTSD, and the sooner you accept that fact, the sooner you can move forward to find what works best for you and your loved one. Learn as much as you can about PTSD. Learn how to communicate with each other and work together. Your battle is PTSD, not each other. There is still life with PTSD; life has just changed from what many view as “normal.”
Q: Is there anything else you'd like to share?
A: I know when you first start learning about PTSD and you see the changes in a loved one or even yourself, it's scary! It turns your world upside down. I just want you to know that things can change for the better. It does not mean life will be the way it was. There is no going back to that. But life can find a new balance and a new normal, even with PTSD being part of it. Do not lose hope, do not let go of love, and work together to make life the best it can possibly be. You both — and your family — deserve that! And never think you do not need or cannot reach out for professional help. The sooner you do, the sooner that new normal will come. Make that reach; you are worth it!
The statements and opinions in this blog post are those of the author and do not necessarily represent the views of the U.S. Department of Health and Human Services Office on Women's Health.