The Mental Well-Being Effects of a Multi-Traumatic Experience
As my mother’s caregiver for the last 5 years, I am all too familiar with the term “isolation”. As caregivers move through the care-process, they quickly become isolated from friends, family, colleagues and community organizations. There is a lack of caregiver champions and financial resources in the local community, which places a toll on one’s finances, physical health and mental wellbeing. According to the Family Caregiver Alliance, 40% to 70% of all caregivers have clinically significant symptoms and caregivers who work full-time show the greatest emotional and physical health deficit in comparison to non-caregivers.
I recently was explaining this initial impact to a new caregiver as “losing yourself”, “servant to a disease” and “hole of despair”. I have found that the caregiver role is not explainable but rather felt through the experience. I was determined to fight for myself, my physical health, my mental well-being and my financial stability. This description of my caregiver experience was prior to my filing for divorce in January 2020 and later the impact of an historic pandemic, COVID-19. From January 2020 to the present, I have been confronted with a multi-traumatic event that was going to test my own words of encouragement, and acts of resilience.
How do you keep your chin up, your head high, your heart filled with hope and your mind focused on being an overcomer in a space of isolation? How do you look at your loved one each day, who is fighting an incurable disease and tell her, “we are going to make it.”? What do you tell yourself when you are notified the courts have shut down due to an uncontrolled virus and your divorce is delayed? How do you look at your bank account, knowing you have to pay your expenses, your loved one’s expenses when a pandemic has shut down the opportunities to earn extra money? What do you lean on when you realize the system has let you down again, as a caregiver, because your loved one isn’t receiving a stimulus check due to their tax filing status? Well, you decide to get up and lead the way, or shut up and swallow your words.
Mental Well-being in the face of simultaneous traumas can look very different to many people. It can go through a fiery process with multi-faceted approaches. According to Kaiser Family Foundation, 53% reported negative mental health effects resulting in worrying or stress related to coronavirus. People are having trouble with their sleeping and eating habits, have increased alcohol and substance use and an increase in preexisting chronic illnesses. Coupling this data with caregiver and divorce data, your looking at a dire situation for many across this nation. Much of our mental well-being is tired to human-connectedness. We need our healthy outlets and positive support mechanisms to be able to cope with life’s daily stressors. Removing those outlets can negatively impacts one’s mental status and ability to depend on those external supports when needed. So, what did I pull-on when everything around me was removed, restricted or eliminated? To answer that, lets look at the definition or meaning behind mental health or well-being.
According to the World Health Organization, a persons state of well-being is when the individual realizes his or her own abilities, can cope with normal stresses of life, can work productively and fruitfully and is able to make a contribution to his or her community. Mental well-being can be tired to the socio-cultural context of the individual. This means, that the individuals external experience is tied to the wellness of the individual. Therefore, the caregiver stressors, economic opportunities and resources, local community support and the effect of a pandemic are all tied to one’s mental well-being.
My personal wellbeing has always been associated with my connectedness with others, whether that be at the gym, at work, with friends, or local community groups. When I was notified by my fitness centers that we had closed due to the pandemic and I would not be teaching my spin classes, I was devastated. Spin class had been my coping mechanism for years. The energy, the music, the people all fueled my inner being and provided a sense of stress-relief to the chaos of caregiving and now an impending divorce. In addition, I needed that financial support to care for my mother with Alzheimer’s and pay for the divorce. I was now digging deep into my reservoirs of strength, hoping that I had an ounce left of resilience to pull upon to navigate the many barriers placed in front of me.
What did I rely on? Who did I reach out to and what were those supports that emerged? Did I have moments of weakness, overwhelming heart-felt pain that led to rivers of tears? Yes, yes I did? If we do not acknowledge the cycles of loss, trauma and pain, then we never move to a place of healing. I would get to myself and cry it out, reach out to a few friends to vent and journal the loss I was experiencing, the loss of my mother to an incurable disease, the loss of my husband and the loss of finances, the loss of my community supports and the abandonment of a system that forgets what caregivers endure.
I began tapping into influences of hope on social media. I carefully monitored the narrative being conveyed into my life. If the words did not include the prospects of overcoming, encouragement and hope, I did not allow it into my world. Our mindset is everything. What we hear and tell ourselves is who we can become. We consciously and unconsciously allow others to shape our world, if we let it. I was choosing a means to a positive end. I wanted to survive, to thrive, beyond what was immediately in front of me.
I aligned myself with like-minded individuals, began spending time in nature and reached to those supports to assist me in caring for my mom. I buried pride and asked for help. It was the only way I could see my way though such a perilous time. While the country was at war with itself, politically, I was finding peace and unity in my local community that reached across socio-economic status, race, ethnicity and gender. I gave myself permission to be weak, to feel and to be vulnerable. The key to thriving is to allow oneself to move through the emotions of pain, trauma and loss. If we bury the feeling, it will emerge in another moment or in another way. This was a huge turning point for me and a “must” in order to thrive and promote a positive mental well-being. What I am describing is individual community resilience. While a pandemic shut our day-to-day coping mechanisms down, individual determination found those mechanisms to thrive. My mechanisms included faith, expression of pain, self-determination, permission to be vulnerable, display of hope by the humanity, nature, writing, and willingness to bend at each unexpected turn in the road.
Mental wellbeing in the face of extreme adversity is not only dependent on the external resources, supports and opportunities, but also on the individual response to that adversity. What have we learned about humanity due this historical pandemic? What I am encouraged to see is that kindness still exists, communities can still thrive and love still endures. However, what are the continued challenges and needs for change? One, is that when it comes to caregiving, there is still a lack of understanding on the holistic toll on the caregiver. It is financial, physical and emotional. Coupling caregiving with any other traumatic event in life can immensely impact that caregivers personal wellbeing and the well-being of the love one.
What are some considerations for the future? Firstly, Legislation needs to be inclusive and comprehensive, that reflects the current systemic challenges of caregiving and provides realistic and simple solutions. The Stimulus Relief Bill (CARES ACT), limited the parameters of “dependents” which eliminated financial support for adult loved-ones, such as parents, grandparents and other adults who need care. My mother was one of them and fell into the gap of available financial resources. This tells me that those writing, reviewing and editing the bills continue to be unfamiliar with the scenarios and burdens of caregivers.
Secondly, opportunities for home-based employment needs to be more expansive to include those who lost their jobs due to the pandemic and caregivers who need to be in their home to care for their loved-ones. Employers should be encouraged to provide alternative work schedules moving forward as a standard business practice that would be inclusive of the caregiver role.
Thirdly, when offering financial support through the Federal, State and local governments, all parameters and scenarios that caregivers face should be considered. Include caregivers as reviewers of sections of the bills through work groups and/or committees. Support for free telehealth, including mental health should be offered to caregivers, especially during an historic pandemic. Stimulus relief should include reimbursement to mental health providers offering free counseling and psychological assessments to caregivers, along with case management and referrals/linkages to resources.
As a final thought, I am ending this piece with my divorce finalized, my gyms back open, and my supports broadened. It has been a ten-month battle and I am still a caregiver and full-time career woman who has navigated another tremendous storm. I am learning more about myself, my community and our nation as we unpack the impacts of COVID-19. The mental wellbeing of our people lies in the hands of our legislatures, our local governments, our community organizations as well as our own individual coping mechanisms. I have spent a life-time of learning new ways to manage adversity and have an arsenal of tools but continue to grow in areas I’ve never imagined. How can we, as a society, equip our citizens with those tools proactively, rather than in a reactive state of emergency? What needs to be done now for all individuals in order to thrive through adversity and not succumb to maladaptive behaviors? The time is now to assess the impact and develop a plan for change.
Anne Frank so pointily stated, “How wonderful it is that nobody waits a single moment before starting to improve the world.” There needs to be no waiting period, no deductible filled in order to make the change for the better good of our humanity.