Caregiving, Divorce and COVID-19

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. 

Caregiver, Sweat That Stress Out

“Both tears and sweat are salty, but they render a different result. Tears will get you sympathy; sweat will get you change.” -Jesse Jackson

There is no question about the impact of stress on a person’s physical, emotional and mental well-being.  Stress in our society looks differently by gender, race, socioeconomic status and age.  However, the stress burden has increased over time across all demographics.  It is toxic, intense and can actually turn your genes on or off.   Stress can cause brain damage, impact memory,  shut down your immune system and increase inflammation in your body.

As it relates to caregivers, the  increased stress burden, is referred to as Caregiver syndrome or caregiver stress.  This syndrome is described as a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient or loved one.  Although it is not listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the term is often used by many healthcare professionals, in the terms of expereinced trauma, grief and compassion fatigue.  With all the known science, knowledge and research behind the caregiver stress, what is the proposed solution?

May 30, 2019 will mark my fourth year of becoming a full-time caregiver for my mother with Alzheimers.  I can testify to the stress like no other, as I still maintain my full-time job, take on a second part-time job as a spin instructor and Health Coach, in addition for  caring for every aspect of my mothers life.  Daily I  fight systems of care, advocate for proper diagnosis, testing and treatment of her illnesses,  manage all her finances, and experience her dementia behaviors in my home.  If you want to truly know what a war on healthcare looks in this country, take on caring for a chronically-ill loved one with limited resources and finances.  My world has been completely altered for both the bad and the good, yes, the good.  I am working on a better me, on a better world, all in the name of love for my mother.  Her diagnosis has changed my life’s direction, permanently.

What I have learned through this caregiving journey has extended my quality of life, through a personal investment in my own health.  However, not every caregiver has this epiphany and is usually buried miles deep in stress due to loss of every kind, including employment, health insurance, retirement benefits, social outlets and finances,  in order to be the rock for their sick loved one.  As the the numbers of caregivers in this country increases, so does the level of burden on the systems of care and the economy.  We are encountering a Public Health crisis with this underserved population being ignored by all professions.

What is the solution?  I have many thoughts on how societal polices and laws could impact an individuals world through local community supports and financial relief.  However, there is not one simple easy answer to address the multifaceted world of a caregiver.  I have always said, if an answer does not exist, seek it, search diligently or become it.  Yes, become  your own answer.  Do not sit in apathy, but instead, stand up and fight for the justice you so much deserve.  Be the voice, the reason and the solution not just for yourself, but an entire population in need.  Research, study, ask questions, do not accept the lack of, the minimalist solutions or closed doors.

I may have read every research article on Alzheimers, wrote world-renowned physicians, sought holistic preventative measures and studied the body composition and  its reactions to environmental influences.  I increased my knowledge of the brain-body connection, inflammation, the importance of proper nutrition, exercise and stress reduction activities.  In a recent blog post, I described the connection between cycling and brain health.  We have ignored brain health for so long and the current dementia epidemic demands that we elevate the science, research and knowledge as a national priority.  In turn, I have taken my love for cycle and translated it into a  disease-prevention approach in my life and messaging platform for others.

Recently, a good friend of mine asked me to attend a heated cycle class, at the Sweat Shoppe in Atlanta, GA.  Yes, that is what I wrote, “heated cycle.”   I sat and processed that request for a minute, and then of course I agreed to go. I mean, how bad could it be?  I had taken heated yoga and was game for anything new, especially fitness-wise.  Well, my first encounter with this “heated cycle” was hellacious, to say the least.  The extreme heat, the intense spin moves, and a packed class full of enthusiastic sweat- loving cyclists had me visualizing a “polar-bear” plunge. (You know, that activity in the middle of winter, where you strip down into your bathing suit and leap into ice-cold ocean water.)

After the 50 minute ride, I emerged from the room, soaking in sweat like I had just taken a shower in my clothes.  Every part of my physical being was drenched and I really was questioning my sanity at this point.  As I left the “heated room” and drove home I could not help but think about the physiological benefits of what I just experienced.  I was feeling great, refreshed and full of energy.   According to the benefits listed on the Sweat Shoppe website, the heat and the sweat have major impacts on your immune system, removes impurities from the body, releases endorphins and much much more.  So let us connect all of this; cycling, sweat, heat, physical activity, brain-body connection and caregiver stress.  This sounds like a health correlation and possible protective factor to me.  If stress is the major risk factor in a caregivers world, let’s increase the protective factors around them at the community level, so there is a positive individual outcome to negate that stress.  In a one hour sweaty cycle workout, I increased my mental, physical and emotional well-being, reducing my physiological response to the caregiver stress burden.

Caregiver, I encourage you to think outside the norm, the societal box, and seek the alternative solutions to address the stress you face everyday.  It will not be eliminated quickly and has life-altering implications on your present and future well-being.  Look for your own solutions, or be open to new ways of managing your stress. Your life depends on it and make the decision that you will not be the next one diagnosed with a chronic or terminal disease.  Defy the data and love yourself enough to SWEAT OUT the small and big stuff.

“We learn more by looking for the answer and not finding it, then we do from learning the answer itself.” -Lloyd Alexander

 

 

Aging Policy Briefing/Meeting in DC 4/13/17

Monday, April 3: On Monday morning, the Aging and Disability Business Institute will host a pre-conference intensive, CBO Opportunities in Health Care Payment and Delivery Systems, aimed at helping CBOs understand and recognize business opportunities within an evolving health care landscape as CMS moves toward alternative payment methods tied to values and outcomes. Monday afternoon, the Aging Policy Briefing formally begins. Attendees will dive into health care and aging policy analysis and updates from the new Administration and Capitol Hill. n4a may host a Capitol Hill Reception on Monday night for APB attendees and their Members of Congress.

Tuesday, April 4: Attendees will convene bright and early to continue the policy briefing before advocates deploy to Capitol Hill Tuesday afternoon for meetings with Representatives and Senators. Please note that advocates will be setting up their own visits.

Click to access 2017%20APB%20Agenda%20Draft_Website.pdf

 

 

First blog post

Well my friends, this is my very first blog post.  I am both excited and nervous at the same time to share my story with you.  Representing the caregiver community is a big undertaking and not to be taken lightly.  With all that we endure and all that we experience, my words and thoughts must lend itself to respect and true understanding.  I have read  an over-abundance of caregiver tips, resources, and  fact sheets over the last 20 months that have either angered me or made me bust out laughing hysterically. The lack of the caregiver experience is evident in these resources.   I love my friends and family, but if they send me one more fact, statistic or caregiver tip that was written by either an academic institution or some funded research institution, I might lose my cool.   If they are interested in facts, they can ask me, I am the statistic. 🙂

My desire to blog on this experience  is to convey the REAL caregiver journey.  This journey is every day, 24 hours a day, 12 months a year.  There is no break, no respite, unless you create it.   The journey I am describing lacks community support, drains your finances, physically beats you down and emotionally empties you from the core of your being.  While I believe in a positive and healthy approach to caregiving, I know the raw experience and refuse to sugar coat the realities of this walk.

My caregiver journey really began when I was a child.  As the first born into the typical dysfunctional family, my role quickly developed into caretaker, mediator, counselor and protector.  As I moved into adulthood, my role became provider, especially for my mother, who lacked a higher education, was low income her entire adult life and could not make sound decisions for her life.  I always say that I did not want this job, but sometimes life dictates circumstances beyond our control.  I could have walked away from this situation very early on in life and may not be where I am today.  However, God developed my character and filled my heart with compassion, empathy and a desire to serve others.  I will never say I had a choice to take care of my family, to me, that is what love is.

Now at 44 years of age, I developed a new love, a love for myself.  Did I have this prior to picking my mom up at the homeless shelter and becoming a fulltime caregiver of someone with Alzheimer’s?  Probably, but I did not consciously take action in my life to self-preserve.  I really should be thanking my mother.  The last 20 months has saved my life. This time has given me new profound meaning and purpose and has provided a self-awareness that I do not think I could have gained, if I had not stumbled down this path.

I am hoping to adequately describe this journey, as it can be horrific, heart-wrenching and devastating to the family’s undertaking the prime responsibility of caring for a loved one.  At the same time, I want to describe the kindness I experienced along the way.  In the face of continous closed doors, denials, appeals,lack of empathy and just plain lack of services, my family crossed paths with angels.  These angels assisted us along the way and to this day, may never know the depths of their impact on our lives.

In future blogs, I will also be discussing the health and wellness aspects of caregivers.  This was and is one of the biggest challenges I have encountered.  You become invisible as a caregiver and before you know it, you have not been to a doctor in two years, you don’t remember what a dentist does and your workout clothes have become your pajama’s.  This is a very scary situation for caregivers and  I will be sharing my on-going successes and challenges with you.

Thank you for reading or skimming my very first blog post.  I hope you will come back and visit me and I hope that I will make the caregiver community proud in being the voice to the largest ignored vulnerable population in the world.  Feel free to leave comments or email me.  I want to hear about your journey.  Lets build this community together!

First blog post

Well my friends, this is my very first blog post.  I am both excited and nervous at the same time to share my story with you.  Representing the caregiver community is a big undertaking and not to be taken lightly.  With all that we endure and all that we experience, my words and thoughts must lend itself to respect and true understanding.  I have read  an over-abundance of caregiver tips, resources, and  fact sheets over the last 20 months that have either angered me or made me bust out laughing hysterically. The lack of the caregiver experience is evident in these resources.   I love my friends and family, but if they send me one more fact, statistic or caregiver tip that was written by either an academic institution or some funded research institution, I might lose my cool.   If they are interested in facts, they can ask me, I am the statistic. 🙂

My desire to blog on this experience  is to convey the REAL caregiver journey.  This journey is every day, 24 hours a day, 12 months a year.  There is no break, no respite, unless you create it.   The journey I am describing lacks community support, drains your finances, physically beats you down and emotionally empties you from the core of your being.  While I believe in a positive and healthy approach to caregiving, I know the raw experience and refuse to sugar coat the realities of this walk.

My caregiver journey really began when I was a child.  As the first born into the typical dysfunctional family, my role quickly developed into caretaker, mediator, counselor and protector.  As I moved into adulthood, my role became provider, especially for my mother, who lacked a higher education, was low income her entire adult life and could not make sound decisions for her life.  I always say that I did not want this job, but sometimes life dictates circumstances beyond our control.  I could have walked away from this situation very early on in life and may not be where I am today.  However, God developed my character and filled my heart with compassion, empathy and a desire to serve others.  I will never say I had a choice to take care of my family, to me, that is what love is.

Now at 44 years of age, I developed a new love, a love for myself.  Did I have this prior to picking my mom up at the homeless shelter and becoming a fulltime caregiver of someone with Alzheimer’s?  Probably, but I did not consciously take action in my life to self-preserve.  I really should be thanking my mother.  The last 20 months has saved my life. This time has given me new profound meaning and purpose and has provided a self-awareness that I do not think I could have gained, if I had not stumbled down this path.

I am hoping to adequately describe this journey, as it can be horrific, heart-wrenching and devastating to the family’s undertaking the prime responsibility of caring for a loved one.  At the same time, I want to describe the kindness I experienced along the way.  In the face of continous closed doors, denials, appeals,lack of empathy and just plain lack of services, my family crossed paths with angels.  These angels assisted us along the way and to this day, may never know the depths of their impact on our lives.

In future blogs, I will also be discussing the health and wellness aspects of caregivers.  This was and is one of the biggest challenges I have encountered.  You become invisible as a caregiver and before you know it, you have not been to a doctor in two years, you don’t remember what a dentist does and your workout clothes have become your pajama’s.  This is a very scary situation for caregivers and  I will be sharing my on-going successes and challenges with you.

Thank you for reading or skimming my very first blog post.  I hope you will come back and visit me and I hope that I will make the caregiver community proud in being the voice to the largest ignored vulnerable population in the world.  Feel free to leave comments or email me.  I want to hear about your journey.  Lets build this community together!