Hospice Care of the LowCountry

Can Caregiving Lead to PTSD?

Caregiving for an ill family member can be a 24/7 job and has its own set of stresses. Add a pandemic and you have a perfect storm for increasing the chances of developing post-traumatic stress disorder (PTSD). 

Despite a lack of research on PTSD among caregivers, the levels of unrelenting chronic stress that caregivers experience are drawing attention and it is recognized as being a risk factor for PTSD.  AARP and the National Alliance for Caregiving have documented in their report, Caregiving in the U.S. 2020, that being a family caregiver can be high stress and in some cases, can bring on PTSD.

“There remains very little research or attention on PTSD among caregivers,” says Dr. Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

“As clinical psychologists, we are also recognizing that chronic stress that is unrelenting, such as through caregiving, can lead to PTSD.”

For many people, it’s not simply physically exhausting, but emotionally, mentally, and financially draining as well. This is especially true for adult children who take care of parents with dementia or a severe disability. Many of them feel an extreme amount of pressure and guilt to provide care, but feel powerless to stop the debilitating condition of their parents.

Jennifer McAdam, an associate professor in the School of Nursing at Samuel Merritt University who co-authored a study about family caregivers of ICU patients, says more research needs to be conducted to establish the true impact of caregiver PTSD. “It is difficult and challenging to get money to study families as this area is typically not considered a high priority in research,” McAdam says.

The pandemic of COVID-19 has put a stop to in-person social interaction and PTSD symptoms can emerge stronger and sooner for caregivers of patients with a chronic illness or disability. A recent Centers for Disease Control and Prevention (CDC) report said the rates of symptoms of anxiety disorder and depression, as well as serious consideration of suicide, have been much higher for unpaid family caregivers than the public in general lately.

Some of the symptoms of PTSD, such as increased anxiety and reliving past experiences, may be experienced by caregivers as reliving past experiences or flashbacks to their loved one berating them during a time when they were sundowning. It can also be feeling like losing the loved one all over again.

Many caregivers suffering from PTSD also report aches and pains that won’t go away and complaints of headaches are common. Emotionally, they may feel unable to move forward and thus experience thoughts and feelings of hopelessness. 

Navigating a whirlwind of emotions as a family caregiver can be draining. It’s all too easy to put the brakes on one’s personal life and feelings while caring for another, but that’s unwise and could be unhealthy. If any caregiver is experiencing these systems, it is important to look into getting some help, either from a home health aide or respite care though this has been made more difficult with the social distancing requirements. There are several good Hospice and End-of-Life Care groups on Facebook and online where other caregivers, hospice patients, and even hospice team members can talk about their feelings and experiences and offer guidance and support.

A lack of family and community support can be a definite potential factor for PTSD among caregivers. Getting reliable support can also be possible through state and local programs that may pay for this kind of assistance. And if the loved one being cared for is on Medicare, that federal program might cover this kind of support, too.

Trivedi says these services “often go unused because people don’t realize they can use” them.

A healthy diet, adequate sleep, regular exercise, enjoying nature, and engaging in pleasurable activities can be useful, too.

“Even if you feel like you don’t have time to do anything, be aware of your thoughts and your feelings,” Trivedi says. “Honor those and know that those are real and true.” Taking regular breaks can help, too. Even a short walk or enjoying some personal time alone can be enough to recharge your batteries.

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