“OTSD” (Ongoing Traumatic Stress Disorder) is a derivative I coined from the military veterans’ condition PTSD (Post-Traumatic Stress Disorder). Caring 24/7 for my physically and cognitively disabled husband has caused me years of ongoing stress. I think my senses have been heightened to the point of over-sensitivity as a result of the constant hyper-vigilance required of me, being constantly responsible for all my husband’s needs, and watching for declines and crises in his condition.

Unlike the military personnel who suffer “post” trauma, caregivers are never out of the situation; there is no “post” for us; it is always present and ONGOING. People who have spent many years caring for an ill spouse may well then suffer PTSD for years after their spouse dies.

Well into my second decade in the trenches of spousal caregiving, I have noticed that a sudden loud noise will startle me. When I’m watching TV, I find myself overreacting to silly things—like cowering if someone in a sitcom is screaming, or gasping if someone falls off a chair. My husband has always sneezed very loudly; but these days, when he sneezes I will scream like it was a gunshot. Sometimes, I will just have moments of free-floating panic as my body tries to release the buildup of stress. If my husband coughs in the middle of the night, I wake up in a flash and spring into action, turning on the light and getting a tissue in case he has phlegm to be cleaned out of his mouth. This has happened enough times that sometimes I will just imagine or dream that he’s coughing, and let out a frightful scream.

One of my Well Spouse® support group friends was in the military in the Vietnam War; some years later, he became a caregiver for his wife who has MS, and he has been caring for her for nearly 20 years now. I asked him which was harder—being in a war or being a caregiver? Without any hesitation, he said that being a caregiver was much harder. He said when you’re in the military, you get trained before they send you into war; all tools and supplies you will need to do your job are provided; you get a salary, medical care, and paid vacation time; and you are surrounded by a team who look out for each other and work together.

As a caregiver, however, there is no training (Surprise! Your spouse is very ill and you are now a caregiver); no one subsidizes the mountains of medical supplies and equipment you will need; there is no salary, and, in cases like my own, the caregiver may have to stop working and LOSE a salary to do 24/7 caregiving. We are responsible for paying the astronomical costs of our own healthcare and that of our ill spouses. There are no vacations (at least no paid vacations, and getting away while providing care for the ill spouse is often too difficult to be worth the effort); and most of us are NOT surrounded by a team. Not even our doctors communicate with each other. Yes, we have a Well Spouse® support organization for emotional support, but many of us lack “well” extended family members and friends willing to help us; my only sources of hands-on help are my expensive home health aides.

I surely would never want to fight in a war, but I often feel that I am immersed in an ongoing, hopeless battle with my husband’s difficult illness. Despite my OTSD, I am fully functional, but I am definitely showing signs of trauma.

About the Author

Terri.2012.Web_.Lg1Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband, Vince, since 2004. Vince is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome (FXTAS). Terri is on the Board of Directors of the Well Spouse® Association (https://www.wellspouse.org/), which offers support and resources for spousal caregivers.

She also serves as the association’s PR chairperson and the editor of their quarterly newsletter Mainstay. She has published articles and has been interviewed for magazine articles and on radio shows about FXTAS and the unique challenges of spousal caregiving.

Although not formally trained in caregiving, Terri has, by necessity, become well-educated in the trials of family caregivers.

10 thoughts on “The Spousal Caregiver: OTSD (Ongoing Traumatic Stress Disorder)”

  1. In case any of the carers we’ve had as we believe
    it will only lead to us receiving worse treatment by the staff in the
    future. Mrs Miles, who set upin 1995, said: We all know budgets are tight, but cuts and under-investment to lower-level home-based care which jeopardise patients’ well-being and dignity must
    be challenged. There are many different types of the disease, no one can escape its grasp.

  2. Jeanne Forsberg says:

    I have been diagnosed with PTSD but have always been a little embarrassed to tell anyone. This is because my Dad had PTSD and I’ve never been in a war. I have been the primary caregiver for my “Rare Genetic” son for 32 years. I told a friend whose son has the same disorder that we have CTSD (Chroniic Traumatic Stress Disorder) reading your blog was very validating. Especially the descriptions of your reactions (I hear phantom alarms) and the comment by the veteran. I don’t know if this is harder than combat but it certainly lasts longer!

  3. terri says:

    CTSD – YES! Wishing you some peace amidst the storms.

  4. You might be interested in watching my recent speech at Medicine X about patients caring for their caregivers. https://bit.ly/197aeD0

  5. You might be interested in watching my recent speech at Medicine X about patients caring for their caregivers. https://www.youtube.com/watch?v=ivjlBstqu_o

  6. terri says:

    I just watched your marvelous speech! Thank you for sending it. You look so wonderful after all you have been through – I am so happy for your recovered health! Your speech was right on . . . except for people like me who are married to people with dementia. My husband does not speak, has basically no communication with me while I fill all his needs because I love him. It is horribly painful for me that he cannot show appreciation or anything! I so wish he could speak to me like you are able to speak to your wonderful caregiver-husband! Wishing you both healthy days ahead!

  7. Terri –

    Words are far from the only way to communicate. I can only imagine how hard it is dealing with a dementia diagnosis; but I hope that you and your husband can at least find a way to be close to one another, present with one another. The man you married is in there somewhere. It may not show in his words, but perhaps you can find it in his touch, his eyes. Caring gestures need not be grand; they only need be honest.

  8. terri says:

    I do try to find what I can in my husband’s touch or eyes – once in a while, I feel that he notices me. Another complication for us is that my husband was beginning with the dementia from the beginning of our marriage 15 years ago, even tho I didn’t know it. My best way of coping is to place our marriage on the Cross with Jesus as an offering, and then I can keep going.

  9. I am so glad I found this post. I am feeling this OTSD in a big way today. Thank you.

  10. Terri says:

    thanks Jennifer! I hope your feelings of OTSD get less.

Comments are closed.

X