by Wendy Gilker
I have been caring for my profoundly handicapped daughter, Bree, for almost 34 ½ years now. Some people say it’s not Post Traumatic Stress disorder (PTSD) that I’m experiencing. Others tell me that, because I’m her mother it’s not a job, but my responsibility to take care of her.
As I look back in retrospect on these years, I am amazed that I am even still on this planet and the only reason I am here is because of my beautiful little daughter.
My daughter fought to be here
She was two weeks overdue, and she was literally dying inside of me. The embolic fluid had turned green, she was totally wrapped up in the embolic cord and the Placenta was turning to calcium. Then when the C-Section was performed, it took her 20 minutes to breathe on her own.
Within 2 months, we were told that our daughter had a syndrome call 4 P- or Wolfs-Hirschhorn Syndrome. It was not genetic, as both Walter and I were tested. It was just what it was.
All these years later, I fight to keep balance.
I put up a good front, yet behind that front I have dealt with 6 years of migraines so intense I can’t stand up, yet I still find a way to care for my daughter. In the last three years I have broken both arms, one foot, and now have issues with muscles in my neck. Within one month, I experienced the death of a family member, broke my arm, and then a fire in my home. My daughter and I had to move out of the apartment we’ve shared for 20 years.
I have dealt with my daughter being sexually abused and the nightmares that followed as I recovered from trusting people who were not trustworthy.
Every time an ambulance passes, I find myself there, reliving the time I rode in one with my daughter in respiratory distress, arriving at the hospital thinking she had already died.
Years of isolation, rejection, poverty, and loneliness are normal when one is a caregiver. Fear and anxiety, nervousness, irritability, sadness, feelings of isolation, guilt, changes in sleep, crying spells that catch you off guard, emotional numbness, nightmares, shock, muscle tension, and inability to stop thinking about traumatic events are normal for my experience. Yet these symptoms were not found in articles about the stress of Caregiving. They are all from articles about PTSD.
PTSD can be triggered by an event that feels unpredictable and uncontrollable. My daughter’s birth was unpredictable and uncontrollable. The doctors told me that my daughter would be lucky to live to 5 years. They said she would have seizures that would take over her life even with medication. They said she would never interact or respond. They said that they would not hospitalize her yet. Am I traumatized? Hell YES.
PTSD is a disorder that can develop following a traumatic event that threatens your safety or makes you feel helpless. I felt totally helpless, hopeless, and terrified. I go down the list of symptoms like a checklist. These symptoms must have lasted for more than a month to be considered PTSD. Well, it has been 34 ½ years.
Managing Caregiver PTSD
That is now my full time priority next to my daughter’s well-being. It is a journey. How do I cope?
I manage by eating a plant based diet (macrobiotic & raw), daily meditation, TRE, walks, yoga classes, and gym workouts, spending time with dogs, reading, music. Spending time in nature is essential for me. It is a lonely path, yet I know what my purpose is here and I will do whatever it takes to fulfill that purpose.
A caregiver is someone who always cares for everyone else but their self !!! Been one my whole life
My daughter was in and out of the hospital for 18 years the last 18 months of her life where a horrific battle (stomach and body failed to absorb or allow any oral intake) she passed in July. I still can not walk into a hospital without having a panic attack. The flashbacks are horrible to. I’ve known for a while I have PTSD from it all.
No other explanation, really,
Especially when it is alcoholic related..
Thanks for sharing this!!
It is rentless and doesn’t get any easier. 21 1/2 yrs here…
I transitioned from almost 3 yrs of 24/7 caregiving straight into breast cancer. And I already had PTSD from an abusive previous marriage. Right now I’m a hot mess
Yes! 14+ years caring for my husband.
I can relate. Been caregiving for 21 years.
Thanks for sharing Lela.
Oh my yes. After 3 years of the constant caring for my Mother I can’t stand noises. I said this last year in June. People looked at me funny.
It’s getting better. Mom is in Nursing Home. Yet in a crowd it bothers me.
Blessings to all caregivers.
Hard work but carers are a godsend ❤
Brutal. And, most people have no idea, which causes more isolation…
It’s real. I agree.
Yes, yes and yes.
have a daughter I care for for 59 years. What will I do if Medicaid goes away?
Don’t worry…..we will fight for you I promise…. There are good people who are finally seeing what is happening…there is too much money made off of Medicaid, it wont go away
This is an excellent article. My twin daughters were born nearly 4 months early and spent 3 and 5 months in the NICU. It was nothing short of terrifying. Then once home the massive cares for them with little help. One daughter became severely disabled as a result of a stroke following her preterm birth, and ended up severely disabled and medically fragile. I remember the first time I picked up a brochure on PTSD and I thought – huh – I have nearly every symptom on the checklist. Later, I spoke with a psychologist who told me that what I described to him as my reactions to the trauma of the girls’ births, was similar to what he has seen only in survivors of prison war camps. This is very real. And so seldom discussed. When you live with trauma of constantly respondng to life and death, it takes a toll. Within the past year, I’ve come across the term “C-PTSD” – or Complex PTSD, which seems to more accurately describe our situations – complex refers to PTSD which isn’t an isolated event such as an attack or a war, but trauma that is on-going.
I have been a caregiver to my grandmother with Alzheimer’s, my dad who is now a cancer survivor and my mother with diabetes and all its complications. I never knew I was a caregiver growing up and never took care of my self especially my emotions. I didn’t understand the gravity of how taking care of so many at such a young age and having had such a traumatic experience with each person I took care of did to me until I was in my 20’s. I make more of an effort to take care of myself and look to get as much help as I can get because the emotional toll it takes to be a caregiver will creep up on you. I’m 23 now and my mom is only one I take care of full time but it is still stressful. My own emotions are a load to carry and I need to take care of them. Therapy has been a great help, and articles like this remind me I’m not alone. I have been having a lot of the same thoughts that where presented in this article.
Thank you,for sharing. I have lived with this for years,but was diagnosed with PTSD 8 months ago. My son is 28 and had 60 to 80 seizurs a day starting at 2 months old up until he was a teenager. Leaving him unable to care for himself ! He is total care. Nonverbal. A baby in a man’s body. I have taken care of him myself with no support from anyone… Not his dad or any other family members. He is my world!
Thank you for sharing, I’m living the same with my son who is now 39
Thank you so much for sharing your story. It’s exactly my life with my son for the last 26 years. This article was so helpful to me.
The first time I described my inability to sleep as PTSD the social worker looked at me as if I were crazy.
Alzheimers is not a single traumatic event but many events that add up over months and years. From the first time he forgets how to tie his shoes, or button is shirt, to the first time he forgets your name.
My husband was diagnosed 5 yrs ago and for the first two yrs I did pretty well. But as symptoms progressed I found myself more and more exhausted and not getting near enough sleep at night. I tried taking naps while he was watching TV, but as soon as he noticed my eyes were closed, he would poke me and ask ‘are you sleeping’. It didn’t take long before I could sleep no longer than 5 min or so before my mind would wake me, anticipating the inevitable poke. When he started wetting the bed (thru the diaper) I knew that he would wake me at least once during the night and I would be wide awake long enough to change him and the bed. No sleep after that, no matter how tired. Can’t take meds cuz what if he needs me and can’t wake me up.
So yeah, anxiety, sadness, sleep deprivation, crying ‘without reason’; all the things that Wendy mentioned. And should I get a few minutes to myself, I find I can’t even read anymore cuz I can’t concentrate.
My prayers and sympathy to Wendy and Denise. The only thing worse than watching my husband slowly waste away would be if it were a child, for whom you had hopes and dreams.
PTSD is definitely a caregivers issue. I watched my child slowly die the last few yrs of his life. He was solely dependant on me for his care and well being. It’s pretty damned traumatic to see your child die right in front if you and theres not a damned thing you can do to stop it from happening.
I am so sorry Denise. I understand.