Article written by Nikki Stephens, military caregiver and blog contributor on the “Confessions of a Caregiver” series.
As I sit in what happens to be THE nicest waiting room I’ve ever been in at a VA in the near decade our family has been submerged into this system, I wait for my husband’s CT scan to be complete. I’ve realized that these are really the only quiet, alone times for myself, and strangely enough, I look forward to these short moments.
I’ve come prepared with my laptop and snacks in tow. It’s an unlikely place for most, but I take the opportunity to gather my thoughts, catch up on emails, take a quick walk alone to the little Exchange on the first floor of the VA, or just sit for 5 minutes and play solitaire on my phone. Today, as I wait for my husband, I sit and write to you all on my journey as a military caregiver, reflecting on my role that sometimes can be difficult.
Who am I? – Wife. Mother. Dual Caregiver.
My husband, John, a Veteran Marine who was deployed to Fallujah and Iraq, suffers from posttraumatic stress disorder (PTSD), traumatic brain injury (TBI) and many secondary issues related to his TBI such as, a visual impairment and epilepsy.
This brings me to our present state – waiting at the VA while John has a CT scan. We are now in phase 2 of his medical procedures, which means we are doing the work up for epilepsy surgery – a vague way of saying brain surgery.
Aside from these moments, I am a mother of five and as I always say, “I have five kids not on purpose.” We had three kids and our last pregnancy was an “OOPS.” Wouldn’t you know we had twins! By saying our house and life are chaotic are an absolute understatement, and to be quite honest, chaos sounds great to what we sometimes see.
Today, our twin boys are 4 years old, and one of my sweet boys, Kealan, was recently diagnosed with autism.
As I work to care for both my wounded husband and my special needs child, my calendar is inundated with VA and Applied Behavior Analysis (ABA) appointments. When early intervention services were first offered to our little guy it was incredibly stressful, as I’m sure it is for many families. Having a husband who struggles with having people in our home, people we don’t know, was draining for everyone involved.
The idea of speaking of the issues my husband faces, such as seizures, to absolute strangers who are here to help our son, was relayed to the BT’s and their supervisors with much anxiety. I felt it was important for all involved to be prepared.
PTSD vs. Autism
Having lived with a husband whose PTSD was very severe for many years and in many ways held him hostage, and our family hostage. The isolation and disconnect from family and friends and lack of socializing with our peers, is exactly what it feels like to have a child on the spectrum. I found myself using the same tools and techniques specifically in public.
Kealan doesn’t like it when a lot people are at our house, just as John, so we don’t have many people over. Kealan does not like places with a lot of people or noise, neither does John, so we avoid. Kealan can’t go to multiple places back to back or be away from home all day; John is very much the same. I’m very conscious their struggles as I plan my days. Kealan has severe meltdowns where he sometimes breaks things; this is very similar to the rage I see in my husband at times.
In my opinion the misunderstanding of both PTSD and Autism are astounding. The public’s reactions when seeing the behaviors of the two are very similar; it’s either a child behaving badly or an adult who’s a loose cannon. Judgement comes in to play almost immediately. As a wife and mother, being put in a situation where you need to explain your loved ones behavior in public is very difficult and even when you offer an explanation you still are given “the look.”
For my fellow caregivers – Thick skin is important and tactful responses are a much needed trait, but definitely something that takes time to acquire.
I can’t say that the experiences with my husband made caring for someone with autism any easier, it was just familiar. I quickly found myself burned out by the time the twins were 2. At the time, I had been caring for my veteran for 8 years until I noticed something was going on with my son. I broke. I was aware of the burnout, but couldn’t seem to manage it.
I wasn’t sleeping because Kealan was waking up every night screaming and I was so scared that John was going to have a seizure while I slept and he’d have to go through it all alone.
Overcoming Caregiver Burnout
Nowadays, I’m beginning to manage my burnout a little more each day. I’ve learned that in my life and in others lives who are similar to mine, we may not have a full day to take to ourselves or on some days, an hour. But what I do know is I can take 5 minutes and do what I need to do to recharge, check in with myself or to simply breathe without having to think of anyone – but me. It’s so cliché, but as caregivers we’ve got to put the oxygen masks on ourselves before we can help our loved ones.
Join me next month as I continue to share my journey as a “dual” caregiver to my wounded warrior and special needs child. You can find my biography and links to blog posts at: Nikki Stephens, “The Dual Caregiver.”