Sharing the Pain; PTSD in Special Needs Caregivers

“understanding PTSD can help you tame it. It won’t make any of us feel better, but perhaps it can keep the ice from breaking beneath our feet.”- Richard Engel

PTSD.  Post-traumatic stress disorder. A stress related disorder that may develop after exposure to an event or ordeal in which death, severe physical harm or violence occurred or was threatened. It’s a topic I know well.  As I write this blog post I am finishing up my fourth combat tour.  I’ve lived through some of the darkest days in Iraq and Afghanistan.  I’ve seen civilization fall, and witnessed what humans are capable of doing to one another during the downward spiral of sectarian violence and civil war.  As a result, I also know the incomprehensible fear that comes out of nowhere, triggered by seemingly innocuous noises, or smells, or memories well after the event.  These are not normal feelings.  But they are the cost borne by many of my peers….and unfortunately shared by my wife.  She is not a combat veteran.  In fact, she has never served in the military and can’t possibly fathom what it is I have seen….but she has PTSD none the less.

PTSD is not often talked about with respect to parenting.  Yet, when you pour your life and soul into another human being, the sheer thought of their injury or death can be devastating.  Parenting a medically fragile child is to have a deep wound forcefully and repeatedly torn open again, and again, and again.  Each and every agony is compounded by the immeasurable fear of the unknown, and the dread of the “what if”.  Through the repeated exposure to the trauma, my wife has been scarred time and again.  My son suffers from a severe seizure disorder.  My wife suffers from loving him too much.

Symptoms associated with PTSD are frustratingly common in the special needs community.  They include bad dreams, distressing memories, pounding hearts and missing beats, sweat and difficulty breathing.  PTSD leads to feeling numb or detached from life, a lack of interest in social activities, inability to experience positive moods, and pessimism about the future.  There is also sleeping difficulties, irritability and outbursts of anger, difficulty concentrating, and feeling easily startled.

Excessive awareness or hyper-vigilance is perhaps the most common symptom.  Those that experience hyper-vigilance are constantly scanning the environment for any signs of danger. They enter into what are seemingly routine or everyday situations ready to spring into action.  As a result they live with abnormally high levels of fear and anxiety.  They also often experience guilt for feeling this way.

My wife experiences all these things, though she probably wouldn’t admit it.  My son sleeps in her arms each and every night out of the fear of him seizing in his sleep.  She hasn’t had a full night’s sleep in nearly 5 years.  Her mind immediately conjures up worst case scenarios of being trapped without help, resulting in a paralysis to go anywhere.  She is hyper-vigilant; the smallest sound emanating from my son, or even lack of noise, can trigger her response mechanism to spring into action.  A funny look in his eyes and she will literally jump to his side from across the room.

In the Army we pull radio watch or fire guard duty throughout the night while watching out for fellow Soldiers as they sleep.  Anyone who has served knows what it is like pulling as shift and watching as the hours painfully stretch through the night, miserable hour after hour. Minutes clicking by slowly, eyelids growing heavy as you await the arrival of your relief.  My wife pulls a similar duty.  Except her shift never ends.  She is on watch 24 hours a day, 7 days a week.  Even when I think I am on duty, her mind and worries never let her truly relax, and it’s mentally and physically exhausting.

Regrettably she is not all that different from others who care for those with complex needs.  PTSD for parents or caregivers of those with special needs is quite common. A 2009 study identified that the level of the stress hormone cortisol was similar in mothers of autistic children to that of other groups experiencing chronic stress including combat soldiers, and even Holocaust survivors. Many caregivers have PTSD but are often too embarrassed to admit it, and wouldn’t know what to do even if they acknowledge its presence.

Post-traumatic Growth

It may seem impossible to see beyond the pain of the present, but there is hope.  While trauma has many negative effects there are also opportunities for those that are willing to find them. Not everyone who experience traumatic events are relegated to wallowing in fear and sadness.   Recognize that the story of your life is not complete.  Some people actually manage to improve their outlook on life and grow from their traumatic experience.

Post-traumatic growth (PTG) is a theory that explains the transformation following trauma and postulates that people who endure psychological struggle following adversity can experience positive growth afterward. PTG theory was developed by psychologists Richard Tedeschi and Lawrence Calhoun in the mid-1990s.  According to Tedeschi after trauma people often develop new understandings of themselves, the world they live in, how to relate to other people, the kind of future they might have, and a better understanding of how to live life.

Dr. Suzanne Danhauer also studied PTG.  Danhauer coauthored a study on leukemia patients. Her studies revealed how PTG results from an active, engaged process of dealing with a stressor rather than the stressor itself.  In that study, patients who went through a period of deliberate contemplation, in which they thought deeply about their experience and how best to find a way forward, were more likely to rebound to a better place. Her coauthor David Feldman found that trauma survivors who experience PTG acknowledge their own sadness, suffering, anger and grief, and are realistic about what happened to them.  However, they are also able to ask: “Given where I am in my life, how can I build the best future possible?”

Psychologists have created what they call a post-traumatic growth inventory to determine if someone has achieved growth after trauma.  This inventory looks at five different areas to see if there is positivity in any of them.  They include a renewed appreciation of life, an increased importance of relationships with others, new possibilities in life, an increase in personal strength, and newfound spiritual change.  Take a minute to conduct this inventory on yourself, you may be surprised to think about how you have grown in the face of adversity and you’re probably more resilient than you give yourself credit for.

The previously mentioned 2009 study on stress and parents with autism  findings also reveal that parents of autistic children are indeed resilient. In fact, compared to mothers of children without a developmental disability, mothers of children with autism were just as likely to have daily positive interactions, serve as volunteers, and lend support to others within their social networks.  They did not let life circumstances prevent them from having meaningful engagements.

Share the Pain, Share the Joy

David Grossman studies the physiological and psychological effects of combat on soldiers.  In his book On Combat, Grossman proposes that in order to fight the onset of PTSD, “Critical Incident Debriefings” should be conducted after traumatic events. It is thought these debriefings help unpack the event and ebb the pain over time.  Debriefing allows those involved with the incident to process the event and reflect on its impact.  Grossman’s two principles of debriefing are: pain shared is pain divided, and joy shared is joy multiplied. 

Like any psychological topic, incident debriefings are not without criticism.  For special needs families a professional counselor can help provide a safe environment to identify feelings and provide rational explanations for why they feel the way they do.  For those who cannot afford counseling services, or are unsure of whom to turn to, other special needs parents may provide a sympathetic group to talk to.

Relinquish your inner control-freak.  Share the responsibility for your child’s care with those wanting to help. Find a friend or partner that you can trust.  Be willing to let go bit by bit.  Trust others to do what you think only you can do.  Start small, perhaps a trip to the grocery store at first and let your confidence build over time.  The biggest help for our family was taking a leap of faith and enrolling our son in school.  My wife admittedly sat in the parking lot for much of the first month, yet now she is pushing her boundaries more and more each day.

As special needs parents we don’t have a monopoly on difficulty and despair.  Everyone suffers in life.  Find a way to share in the joy of others.  Don’t give in to negativity and the natural pessimism that comes with PTSD.  Find ways to remove yourself from a conversation or situation if it becomes negative and you feel yourself becoming resentful.  It’s ok to be happy for others, even if you cannot be happy for yourself in that moment.

Allow yourself to have PTSD.  Stop feeling guilty.  Reach out for help.  Your friends and family can’t possibly understand what you are going through but they undoubtedly love you and desperately want to help, even if they are not postured to do so.

If you’re a friend or family member, let the person know you care about them and will be there to offer emotional or practical support. People who have experienced PTSD may feel numb or over-stimulated and may want to withdraw from their environment.  Whatever their needs, let them know you’re there for them and offer your assistance while also being prepared to back off. What special needs caregivers may need most is not treatment but the love and support of those around them.  Whatever you decide to do, share the pain, share the burden, and share the small victories that will undoubtedly come along the way.

So What Does PTSD have to do with Finance?

This is a finance blog after all.  PTSD also has a real impact on our financial decisions because PTSD affects our behaviors. The field of behavioral economics attempts to identify and understand why people make certain financial choices.  The characteristics of market participants influence individuals’ investment decisions as well as overall market outcomes.

Traditional economic theories assume that individuals are endowed with certain risk preferences that are unaltered by experience.  These risk preferences model how a hypothetical person will react to various risk inducing scenarios.   However, as we continue to investigate  behaviors we are learning that real people’s risk tolerance is derived from their collective life experiences.  A person’s past may shape whether they are risk averse, risk neutral, or even risk seeking.

A study from Cornell University looked at how PTSD affected a person’s risk-taking behavior and the impact on their decisions to invest in the stock market.  It found that psychological shocks affect an individual’s willingness to take financial risks.  Those who experienced trauma where less likely to be risk seeking and where more conservative in their investment choice.  Combat veterans were found to be 14.10%-17.64% less likely to invest in risky assets such as stocks or mutual funds when compared to their combat-inexperienced peers.

Why is that such a problem?  Because while investing in the stock market is indeed risky, losing your purchasing power each and every year from inflation is often a worse outcome.  Investing in stocks is often the only way to outperform the effect of inflation because stocks generally provide higher returns as the premium paid for the risk you take in investing.  While there is inherent risk in investing, it’s important to note that the stock market has reliably trended upwards over the long-term even with the many ups and downs along the way.  By failing to take advantage of stock market returns, people will likely fail to meet their retirement goals.

Talking to someone about your feelings, and seeking professional help is the first step in addressing the effects of PTSD on your life.  Reach out to others for help.  Conduct a PTG inventory, and focus on which areas you can grow in.  After all, your financial future just may depend on it.


Interested in this topic?  Before you go…read this.  It’s a post by Richard Engel about his war on raising a special needs son.  His description of fear, and anger, and envy will likely resonate with you.

 

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Categories: Investing, Personal Growth

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