Living with PTSD while caring for the world

Samantha Torrence - A few months ago Shawn Gourley received a request for an interview. In between then and now she lived a trial that changed her outlook on life. She says her answers today are different than they would have been back then. Her answers will illuminate the reader on what a roller coaster ride living with Post Traumatic Stress Disorder (PTSD) can be.

When you started your Facebook page, did you ever imagine that you would be the secondary caregiver for thousands of veterans with PTSD and their caregivers?

No, I had no idea that it was going to be like this. When I started this I was hoping to help spouses understand what PTSD looked like--what it really looked like in the home--and give them some peace of mind about what they are dealing with. The problem we found was spouses couldn't explain what the vet with PTSD was thinking and feeling. We as spouses were just guessing, basically, throwing darts at a board hoping something would stick and make sense. We needed the vets who had been living with it to explain why they were doing the things they were doing, and that is when the true gift of Military with PTSD started to show.

For example, a spouse--let's call her Jane--comes to the page asking about her vet, who we'll call John. Vets on the page are able to explain to Jane why they were acting differently with PTSD than before they had the condition, even though their circumstances might be different from those of John. They were able to explain things to the Jane that no doctor or therapist ever could, which in turn gave Jane an understanding and compassion to deal with her own veteran with PTSD. Then, as people likeJane would be there a while and start to learn a lot, vets like John would kinda lurk on the page to see what it was all about. Next thing you know, we have vets helping spouses, spouses helping spouses, and vets who were able to reach out to other vets, connect, and encourage each other to seek treatment.

We became a family there, and any time a vet would stumble, all the spouses and vets would come together to support and encourage the person having the problem. Before I knew what was happening we exploded to a membership of over 14,000, and we are still growing. It all happened so fast that sometimes I have to sit back and go, "Wow! How did we get here?"

You recommend that caregivers take care of themselves so they do not get burnt out and can stay energized for their veteran. With so many people depending on you how do you follow your own advice? How do you find the time?

If you would have asked me this question even 2 months ago my response would be very different than what it is right now. Two months ago, I would have told anyone: take a break, find a friend to talk to, go for a walk, or sneak a 15-20 minute bath in by yourself including locking the door and lighting some candles. I was doing all those things all while caring for Justin and taking care of everyone on the page pretty much 24/7. Back in May it all started to unravel fast, though. By June when the dust settled, Justin and I were left standing there, looking at each other going: How did we get here? How is it that we, of all couples, are on the verge of falling apart? Where did we go wrong?

After some time looking over the previous year and a half, it is really no surprise we were in the position we were in. We had become very complacent in our relationship and our treatment of Justin's PTSD. I had everything running like a well-oiled machine. I kept Justin on a schedule so he wasn't triggered by something new or some unexpected surprise. I would continue to work with the page, and any time someone needed me, I was there. When Justin would leave for work, I would have 15-20 minutes before the kids came home from school, and that was my time. I thought I was doing good. I had the family running like clockwork, I was taking care of myself, and if we got an emergency late-night call, I would take it so Justin wouldn't be bothered.

I did this for over a year and thought things were fine. I figured I knew Justin's PTSD well enough that if he got into trouble, I would be able to see it and help him like I always had in the past. The problem didn't come from me being burnt out; it came from us thinking everything was okay. There was an emergency call one day as we were on our way out the door to the VA. I sent Justin on and stayed behind to help the vet in trouble. I was thinking, "This is fine. Justin has gone to the VA. He will be fine." The problem came when they switched Justin's meds, and because I wasn't at the appointment, I didn't know it. If I would have known, I would have been watching for any sign of something not being right. And I figured if something was wrong, Justin would tell me, not realizing or thinking that if he is in a PTSD episode, he won't realize anything is wrong.

Weeks later we had the full disaster of his bad decision-making and his meds being off. And because I had been unaware of the meds change, I was caught completely off guard. The whole situation rocked our relationship to its core. I thought by taking care of myself and making sure everything stayed running without incident that meant everything was fine. But instead of things being fine, Justin's PTSD was making him hide his poor decisions from me so I "wouldn't get mad" and not allowing logic to show him that if he was doing something I might be mad about, then he shouldn't be doing it in the first place. Also, he was telling himself that the work I was doing on the page was so important that he did not want to "bother me" with "insignificant things." Little did he know that those things were far from insignificant; he just couldn't see it because his meds were off. When I found out about his actions, I was both mad about what he had done and mad he had lied about it, and yet at the same time, I knew that part of what happened was beyond his control due to his meds being off. All of this has made it very difficult to process in terms of right and wrong. His behavior was obviously wrong, but I know his meds being off made him do and say things that he normally wouldn't do because his logic wasn't there. The hardest part for me was not being able to fully assign blame to either him or to me but really see how both our actions played in the situation.

All of this taught us a very important lesson. The biggest one was the breakdown in communication between us. When things shift from the norm, that should be a big red flag that something is wrong. Secondly, it is very important to take care of myself as a spouse, but staying involved in Justin's treatment and knowing what is going on is something that can't be taken lightly. I think it's true of all couples who are coping with PTSD; it is so much better for everyone when both parties are involved and know what is going on than to be complacent thinking everything is okay. When PTSD is a factor, staying involved with every aspect of your spouse's life is so important. If I would have known what was going on and paid better attention, we could have dealt with things much sooner and they wouldn't have spun our life so out of control that it derailed us to the point where it has taken almost 2 months to get things back under control and back on track.

As a result of all this, I was under way more stress than usual, which took its toll on me by the end of June until now. I ended up with an obstructed kidney that caused a very nasty infection and required surgery. Normally I can bounce back after surgery for kidney stones in a day or two. This one had me flat on my back and sick as can be for over a week afterwards. I was very grateful that by that point Justin's meds were back to normal so that he could help take care of me when I needed it. I think it helped us both to see how much we depend on each other, just as any couple does, but also how much we both need to be there for each other due to our unique circumstances: my bad kidneys and his PTSD.

Is Justin ever jealous of all the time you spend with Military with PTSD? If so, is there any special way you remind him of how loved he is?

Justin would say no, but he has expressed frustration at times when an emergency arises at 2, 3, or 4 in the morning or when we would try to spend some time together and the phone would ring, pulling my attention away for hours at a time. It was actually because of these issues that the idea for the caregiver hotline bloomed. For the longest time, it was only me, day in and day out, who spouses and vets would call for help. There were days and nights I wouldn't sleep because I would be up all night helping a suicidal vet only to get off the phone and have it ring with a spouse at their wits' end. That is when we knew we needed help and we needed to get spouses set up so they had other spouses to call. This is why we decided to set up a hotline staffed by volunteers who are themselves spouses of vets with PTSD. We are still working on the hardware and software configuration since we don't have a central call center. We are trying to do this to allow the spouses to take calls from their own homes or computer. It's a little more tricky, but it's do-able. At this point Justin will tell you the best thing I am doing to show him I love him is to keep working away at these programs, getting them set up and operational.

You say to caregivers that the key to helping their veteran is to be educated on PTSD, how do you stay on top of your continued education?

I spend much of my time talking to experts in the field. Also, living with PTSD will teach you more than any book or doctor ever can. The biggest thing is talking with other spouses and vets. On the page you can start seeing patterns of things that are happening. Not only is education important, but you have to understand why the veterans are doing the things they are. So many spouses in the beginning are caught off guard and take everything personally thinking their vet hates them. Until they come to the page, no one has ever taken the time to go, "Hey, what your spouses is doing is completely normally for someone with PTSD. Our husbands did this too." Hearing that from other spouses and being able to talk to vets to explain why their vet is doing these things and what their thought process is gives spouses the ability to take a step back and go, "Wow, I'm not crazy! He's not crazy either! Now I understand why my vet flies into a rage if I am 10 minutes late." To us as spouses, 10 minutes isn't that big of a deal. To a vet who has been at war and seen all they have seen, 10 minutes late in their mind means you're dead. They are already thinking you have been in some horrible accident. So when we as spouses don't respect the time we tell them we are going to be home or blow it off like it is no big deal, it is a big deal to them because over there it the difference between life and death.

When we say education is key, it is. PTSD and veterans don't come with an instruction manual. We as spouses can unintentionally trigger our vets' PTSD without understanding how or why. When we understand why things that aren't that big of a deal to us can start World War III in our home, it helps us not take things personally and start to pay attention to the things that stress out the veteran and make sure not to unnecessarily trigger the veteran's PTSD.

If you had to do it all over again, would you become the founder of this non-profit organization and support page?

If I had to do it over again, yes, I still would have done this. I would have done it differently, although I'm not really sure what that looks like other than having more help to staff the page. Fortunately though, during the past few months when our personal life has needed more attention, we have had some really great admins step up and fill in for me, which helps a lot. Right now we are still developing the programs Military with PTSD will be launching to help more spouses and veterans. That is our focus right now.

Long-term care for elderly a growing crisis for American families

[caption id="attachment_8996" align="alignleft" width="225"] Delphine at meeting hall[/caption]

The question is reasonable because even though financial planners advocate long-term care insurance, it’s likely if Grandpa has any real health problems he either won’t get it or will have premiums so high he will have to choose between eating at the present or having a nursing home bed in a decade.

The pitch for a sale sounds good from the insurance agent who gives all good reasons for buying long-term care and buying it early so premiums don’t become high.  Still there are enough exclusions to create barriers, even for the young adult.  These include using using certain medications over a period of time, for example prednisone, a drug that is recommended for a number of conditions, including asthma and arthritis. But many insurance companies will likely refuse, or seriously rate, the applicant with this situation.

Grandpa is 75. He has ocular myasthenia gravis, a condition that could or could not become systemic for many people, but not if the individual has had the condition for more than a couple of years. Grandpa was diagnosed three years ago and has no issues of balance or coordination that would imply a spread of the disorder beyond the ocular area. Still, Grandpa can’t get insurance from most insurance companies either because he takes prednisone (every four to six months for four to five days) or simply because of the diagnosis itself.

Lillian, a 60-year-old neighbor, is able to buy long-term care but has found it very expensive because she is a diabetic. The diabetes has been well controlled during the five years since her diagnosis, but the rating from a standard policy is 10% higher than others, making it unaffordable for her. Her insurance options are limited, with few companies willing to take Lillian as a customer among the number of companies available.

Medicare doesn’t cover long-term care, and as the recession has taken the savings and jobs of younger folk, the children might not have funds to help. Besides the numbers of baby boomers without children increase the problem as well, as more and more senior assistance centers won’t take Medicaid. This is even more likely to happen with the changes proposed by Republicans to slash Medicaid payments and raise the bar for qualification, as detailed by the American Association for Retired Persons who offer a synthesis of recent proposals.

The problem is made even more difficult by the fact that 40% of the elderly needing long-term care depend on Medicaid, which means the oldest and sickest of the group.   And that Medicaid only becomes available after the senior has exhausted virtually all of his/her assets. While the problem of what to do with the great numbers of seniors entering the health care system with complex diseases increased, politicians offer solutions that often don’t offer much hope. The liberal ones avoid the problem altogether, and the conservatives seem to say “tough luck.”  The problem, however, is anticipated to become very great with the growing number of seniors needing assistance. It is complicated because of the fact that middle and low income persons have less discretionary income for long-term care insurance or may not qualify for it.  Furthermore, the fact that the seniors must exhaust virtually all savings before using Medicaid creates problems for most people as the surviving spouse is virtually impoverished as well.

Some experts have recommended price-rewarded savings, now being used by some states to encourage savings. With this type of program, for every qualified portion of savings one receives a chance at a special prize, usually a substantial amount of money.

The options are few that seniors can use for long-term care as costs increase, restrictions develop and the number of users grows, but one of them is the senior community of people over 55 itself, where in many instances the more active of the group pitch in and help the others. This is true of the community of Ryderwood, for example, a town created for and by senior citizens, following its initial history as a loggers camp for families. As one elder recently said, “Who knows better what it takes to grow old and do it with dignity but people just like us?”

The problem is that because of age restrictions selling the property is said to be more difficult because the pool of buyers is limited. On the other hand, some folks say that the restrictions in many ways increase the number of buyers who seek that mutual support in lieu of assisted living seniors.

In the meantime as seniors explore options for care, the problems multiply as the typical caregiver, ordinarily other family members or children, are burdened with financial and physical demands from the lifestyle needed to keep up with the cost of living and the demands placed on growing families. In addition, there are many seniors who have either never had, lost children or have children with reduced capacity to act as caregivers in a crisis.

Potential solutions may develop as more and more seniors opt for community-based support. These include the Meals-on-Wheels programs, grocery store deliveries and home care assistance on a fee-for-service basis.

While seniors plan for the likely, experts say everyone should plan as early as possible for those declining years and then update those plans periodically as circumstances change. With the quarrel over “entitlements,” it is likely it may soon be time to change one’s plans again, as the changes are likely going to make long-term care more difficult and more expensive. Then what happens to Grandpa and Grandma when their options no longer exist?