Re-Post [Issue #16] The Caregiver's Struggle
An essay on the caregiver's mental health and wellbeing
“The day the roles reverse is foreign. It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect.”
-Lisa Goich-Andreadis
It’s probably 2 or 3 am and my jaw is killing me. The constant and chronic grinding of my teeth while I sleep at night wakes up my wife. If it’s not the teeth grinding at night, it’s the ever-shifting expectation of what each day might bring.
Then, before I know it, it turns into a hard day. A really hard day. A day filled with shame spirals, phone calls to the suicide hotline, and an ER visit for suicide ideation. A day that reminds me of one so similar, years and years ago, I gasp at the recollections drowning me in sorrow. The noose never felt so close and, back then somehow, it wouldn’t have been tight enough, either.
There were moments, in what feels like stretched sheets of time, where I behaved so poorly, it would shock anyone who knows this more “new” me. This new me has taken literal years to take shape, to be given a voice, then given enough space for my new voice to be loud enough, drowning out all the bullshit spewing in. Around. Through.
My wife and I have navigated our way through multiple episodes of emotional stampeding, angry outbursts, and hundreds of hours of intense therapy. We both attend 12 step recovery for our own emotional and social support and do individual and couples therapy (PSA: in all seriousness, the trick to a healthy marriage is couples therapy). We won’t dive into the complexities of caregiving within an intimate partnership or how the inter-dynamic between two romantic partners sways between one of power and one of control; These subjects are on my list of things to research and write about at a later date.
My wife happens to be my caregiver. A caregiver can be anyone, but for the sake of this article, I’m specifically speaking to familial and personal caregiving for someone suffering from mental health struggles and complex trauma. Caretaking for someone suffering from a physical illness or terminal disease is undoubtedly as exhausting as caregiving for a combat veteran, but the modes of caregiving can be quite different.
If my day can be filled with this kind of emotional onslaught, imagine the life of someone taking care of someone struggling with their mental health. We’ve covered it before, but it bares repeating - there is no cure for PTSD or complex trauma, there is only constant inner work and reflection to process through it all while simultaneously hanging onto the hope we can still live with some inner joy and gratitude.
Caregiving for an intimate partner is different than caring for an aging parent. Caregiving for an intimate partner requires the finding and honoring of daily juggles with balance. It involves a healthy amount of respect and empowerment. It involves setting boundaries and then re-enforcing them because who likes boundaries where there were none before? And it involves a willingness to commit to your health for the sake of saving your life.
Caregivers are tasked with the answering of personal questions, both for themselves and as a couple, and caregivers are often asked to speak up or, sometimes, on behalf of their loved one. There have been a number of studies identifying the long-term mental and emotional toll on unpaid and family caregivers. This one’s abstract is pretty point blank about the toll caregiving can take:
“Caregiver burden and psychological distress were examined in a sample of 71 partners of Vietnam War combat veterans. Partners of patients diagnosed with posttraumatic stress disorder (PTSD) experienced more caregiver burden and had poorer psychological adjustment than did partners of veterans without PTSD . Among PTSD caregivers, patient PTSD symptom severity and level of interpersonal violence were associated with increased caregiver burden. When accounting for patient PTSD symptom severity, hostility, presence of major depression, level of interpersonal violence, and health complaints, only PTSD severity was uniquely associated with caregiver burden. Caregiver sociodemographic factors including age, race, education, and the availability of social support, did not moderate the relationship between PTSD symptom severity and caregiver burden. Caregiver burden was strongly related to spouse psychological adjustment.”
and this study from 1997 from a publication from the American Public Health Association:
Informal caregivers constituted 15.0% of the sample. Caregivers had higher rates of affective (6.3% vs 4.2%) and anxiety (17.5% vs 10.9%) disorders than non-caregivers and used health services for mental health problems at nearly twice the rate.
CONCLUSIONS: Documentation of the prevalence of caregiving and the increased prevalence of psychiatric disorders, disability, and service utilization among caregivers is of critical importance as governments continue to move toward community-based care.
And all of these numbers are before Covid-19. The graphic below (taken from this study by the CDC) illustrates some of the differences between pre and post-Covid-19 markers for mental health struggles. Imagine those of us struggling with our symptoms every day, then add the pandemic and burgeoning explosions of emotional dysregulation, and then consider the interior lives of our caregivers in all the aftermath.
Our caregivers who rarely complain. Our caregivers who do things that are necessary not because they’re desirable. Our caregivers, on constant watch for our safety. Reminding us of medications and showers. Our caregivers, taking on 90% or more of household responsibilities like financial management, vacuuming, dishes, parenting, (maybe even working while doing all of this), grocery shopping, driving to myriad appointments because the loved one is unable to.
The question then becomes, who’s taking care of the caregiver? All the information one can find on self care for caregivers sells the “self-care” model but the problem with self-care is that it takes time and energy. When you’re caregiving every day for someone struggling with their mental health, there is likely a distinct lack of energy or time. So, what can the caregiver do for their own mental and emotional health?
It is quite discouraging and unfortunate that many of the answers simply involve privilege (here in the U.S.). The privilege of either having medical insurance or resources that would cover the cost of hiring a caregiver without going bankrupt.
Other options are not as luxurious - they may include cycling through different family members to caretake (though, during the pandemic, it became nearly impossible to have outside help of any kind in the home), seeking compensation from a program (like the VA’s Family Caregiver Program), or seeking out non-profit organizations for programs that benefit both the mental and emotional wellbeing for the caregiver and the veteran, like Operation Mend, funded through the Wounded Warrior Project (there are many, many more), and locating a trauma-specific therapist (either through the local VA or by using this search directory) to help process through the complexities of the trauma - having a therapist on board will not only allow the caregiver access to another support system, but it allows space for the caregiver to air grievances, feelings, thoughts, and experiences.
Everyone needs to be seen and everyone needs to be heard. Having a therapist I trust and can rely on has changed many days for the better and I’ll argue my wife would agree with that, and that she may feel similarly.
This article in Forbes Magazine explores the impacts of caretaking on caregivers (who may suffer from mental health issues themselves):
“For example, if you suffered from anxiety or depression before caregiving, you’re more likely to develop PTSD symptoms than someone who doesn’t have those conditions. And if you struggled with trauma in the past or are suddenly thrown into a caregiver role without preparation, experts say, caregiving can lead to PTSD symptoms.
Life experiences can adversely affect caregivers, too, including their socioeconomic status, divorce or the death of a child or parent. The more unresolved loss or trauma, the more likely a caregiver will carry extra stress. That’s been true for Smith, who lost her father when she was 12.”
Caregiving can be a lonely, tiresome, deeply painful experience and because of this, the feelings of grief, remorse, anger, confusion, sadness, those feelings can seem like a never-ending cycle. They don’t have to be.
While there may not be a “cure” for PTSD and complex trauma, there are resources and support systems that can help navigate life as a caregiver or loving someone with PTSD - find a (non-exhaustive) list of some of these resources below:
“You wanna fly, you got to give up the shit that weighs you down.”
-Toni Morrison, “Song of Solomon”
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Thank you for not only acknowledging caregiver burden, but writing about it from the standpoint of the needs of a combat veteran with PTSD. Some days I am filled with resentment and rage, and others pure compassion (though the latter took me years, because of what I have experienced from the fallout of my loved one's trauma). Not sure I'd be here without Al-Anon -- certainly wouldn't be married to the same person anymore.
I'm grateful for your work here, Adrian. Keep it up.