Systems of Care – Vivrant Wellness

Caregiving, Divorce and COVID-19

December 17, 2020 by Heather Oglesby, posted in Caregiver Resources, Caregiver Statistics, Data, Legislation, Coping, Health, Health and Wellness, Mental Health, Public Health, resilience, Systems of Care, thriving, women health

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.

Pain Recycled, A Wellness Approach

May 14, 2019May 14, 2019 by Heather Oglesby, posted in brain health, Caregiver Resources, Coping, cycle, Health, Health and Wellness, Mental Health, Public Health, Systems of Care, Uncategorized, women health

Recycling is the process of collecting and processing materials the would otherwise be thrown away as trash and turning them into new products. When we think of the term or the action of recycling, we usually are thinking of plastic bottles, metal objects, cardboard materials and so on. However, in light of May being Mental Health Awareness Month, I would like to focus this blog post on how we recycle our personal experiences and heart-felt pain.

Our health and wellness journey cannot exclude our mental health. Our mental health impacts our physical, emotional and spiritual well-being and vice versa. It is tightly interwoven into all aspects of our life. Mental health is one of our greatest assets and supports our ability to overcome challenges and obstacles. It impacts our relationships, our abilities to function in the workplace, individual life goals, finances, and much more. If we do not address our mental health as part of well-being, our desire for healing and being whole will never come to fruition.

Everyone single human being walking this earth has experienced stress. The stress can differ among us and will sit on a sliding scale of intensity in different points in your life. That stress can lead to avenues of great pain and mental anguish. If we do not address that pain in our lives, over time, we end up recycling it into our future experiences. Those recycled feelings and experiences if not processed in a healthy, productive way, will strengthen the vicious cycle of unresolved pain.

Therefore, the question is, what are the proper materials needed to recycle our pain so that it can be used for a new purpose in life and not just left-over trash that can clutter our potential? Lets look at some material needed to translate the experience in a productive way.

1. Identify It! Become self-aware. Notice your reactions, emotions and mental thoughts that occur in a situation. Where are they coming from and are they congruent with the experience? Alot of our responses to a situation, a person or event are exacerbated by previous experiences. It is a build-up of old trash that never was taken out, let alone recycled.

2. Slow Your Roll! Before making a final decision or display an extreme reaction; feel that pain, sit with it, and give yourself time. Be gentle on yourself and others. We are wrapped in emotions and thoughts that can be projected onto others, intensifying the current experience. Spend time with yourself, sort out those emotions, clean up your thoughts and place it into its proper context.

3. Practice a Wellness Approach! Whatever relieves stress in your life that is not harmful to you, do it! Go for a bike ride, practice yoga, meditate, confide in a friend, or try something new. Remember, an “approach” is different than a one time “occurrence”. An approach is something you can regularly incorporate into your life that can assist you in recycling that painful expereince.

4. Turn Your Pain into Purpose! One of the biggest influence on my healing in life has been giving back to our world. What I realized early on was that my experience is not exclusive to me. I am not alone and am walking this earth with many hurt human beings. When I began to take my message to the streets, I realized that there were others who could benefit from what I was learning. If you want to recycle your pain into a product that has a new, fresh and fruitful use, help someone else. You will quickly find that your pain becomes the catalyst for your purpose.

Lets make a deliberate effort to address our mental health in our wellness plan for our lives. Make your pain, your emotions and your thoughts a priority, so that all other areas of your life can evolve. Remember, there is truth in your pain. Do not be ashamed of it, but instead, recycle it for a new use in order to support the growth in yourself and others. Our world, your community and you are depending on that process.

“One small crack does not mean that you are broken, it means you were put to the test and you didn’t fall apart.” -L. Poindexter

May-is-MHA

The Portrait of a Caregivers World

March 13, 2019March 13, 2019 by Heather Oglesby, posted in Systems of Care

“Sometimes the strongest among us are the ones who smile through silent pain, cry behind close doors and fights battles nobody know about.” Four years ago, I became a full-time caregiver for my mother with Alzheimers. Four years ago, the self I knew became buried in pain, sacrifice and battle for someone else’s life. Today, I can say that my emerged revitalized self has new meaning, purpose and intention. However, the pain and experience has not ended, instead it has shaped my world beyond something I never foresaw.

Everyday, I smile, laugh, listen to others problems, console the person with a complaint about their life, and then continue to complete the duties of a caregiver for a loved one living with dementia. Friends, coworkers, colleagues and acquaintances will ask how they can help, state that they cannot believe the sacrifices I make, or just sit and listen with no obvious solutions to gift you. However, because this is my walk, it is my responsibility to share this experience with the world. The lack of solutions is to be expected and sometimes doesn’t easily exist. The reason for that, is because you are the solution.

Caring for a person with a chronic illness for a long period of time is truly one of the most character-building life activities that one can go through. People will lose their patience with your experience, lose the level of empathy and understanding they once had and begin to dissociate from your world, due to your continued limitations you have. More frequently, I have had to say “I can’t”, “thank you, but no thank you”, call out from work, and look for creative solutions and opportunities. You see, the length of caregiving is never really discussed as an overall impact on ones health and well-being. It can be a long brutal obstacle course and the stamina and endurance that is built cannot be compared to any other race.

In today’s race, I write this blog from the hospital, as my mother is undergoing anesthesia to have three MRI’s. Multiple doctors have ordered MRI’s for her brain and back due to her Alzheimers and severe Osteoporosis. The hospital and I have become very familiar and the atmosphere of illness, stressed families, and emotionally-numb medical staff are now a major part of my world. The starting line-up to todays course starts with requesting time off a week ago. That in itself can be one of the biggest hurdle, negotiating time off with your employer.

I took one week off from work to handle my moms medical needs. I did not take off to vacation, go on a girls trip or romantic get away. I used my annual and sick leave to care for my ailing mother. I want to describe a couple hours for you today from the lenses of a caregiver. I wake up early (4am) and grab a quick cup of coffee. I, then move to my mothers room, where I awake her from sleep and orient her to the conscious world. This means telling her what time it is, to take off her clothes, get in the shower, dressing her, grooming her, giving her medications, all before jumping in the shower myself. This entire process takes about 2 hours every morning.

As we drive to the hospital, I put on her favorite playlist to relieve the stress I know she feels. She taps her foot, but does not speak. She knows I am about to take her to a place she abhors, the hospital. We arrive in a flurry, as I always do, because no matter what, there is never enough day-time hours to handle all life tasks as a working caregiver. She reluctantly gets out of the car, and then begins the psychological fight. The slow walking, the attitude, the non-verbal disdain for anything medical, followed by the shut-down. There is no communication, no eye contact and definitely no commitment to reality or owning any part of the experience. It falls on me to be two fully-operating brains.

We enter the hospital and here comes the ignorance of Alzheimers from the medical community meeting me at the door. They begin to ask her questions that she obviously cannot answer and then look at me, like “what’s wrong with her.” I point to her diagnosis on paperwork and look at them with expectation of behaving decently and with knowledge of the disease. Nope, nope, wrong expectation Heather. As the technician asks me why am I signing papers for her, I look at him and have to state, “I am her Power of Attorney and she has Alzheimers Disease!” Yes, I had to discuss my mothers cognitive inabilities in front of her, due to the lack of training and awareness around this disease.

Next round of staff emerge; the MRI tech, the lab staff and nurses, all with whom I have to go through the same process, as my mother declines more into her protected isolated shell. As they hook my mom up to IV’s, her eyes are closed and tears run down her wrinkled tired face. I am simultaneously filling out paperwork, answering medical questions and consoling her, wiping her tears and holding her hand. As they whisk her away, I am told to go sit in the lobby for three hours. I look around and see sterile walls, no form of calm or tranquility and decide to excitedly (not) nourish myself in the hospital cafe and write this blog.

You see, the caregiver is the strongest foundation a loved one could have and the whole entire bridge to the healthcare system. We hold every answer, offer every solution and make ongoing recommendations in order for our loved ones to have some sort of quality of life. We should be the priority in the preventative sense as we try to reduce the impact of disease in this country. Caregivers should continue not to accept poor treatment, demand to be prioritized and integrated into all systems, policies and practices across the healthcare industry,

I described one morning of a caregiver’s world, from 4am – 8am, to be exact. Multiply that by 12 more hours for the day, times 7 days a week, 4 weeks a month, 12 months a year, for how many years? Think about the toll this has on a caregivers world. It is monumental. Try to describe this world to an employer, a friend, and even medical professionals. The caregiver, as an individual, is hidden beneath the disease, overshadowed and forgotten, and yet remains the kryptonite for the one diagnosed with the disease. Employers, hospitals, medical communities, fitness and wellness centers, community organizations MUST focus on the caregivers experience in order to alleviate the stress and burden of caregiving. The caregivers risk factors for developing a chronic disease is astronomical. The physical and emotional impact of dementia caregiving resulted in an estimated $9.7 billion in healthcare costs in 2014.

I took a snap shop of my morning, not for pity nor glorification efforts, but rather to continue to describe the reality of the burden fo the caregiver role. Society needs to address this role in all forms, as a Public Health crisis is on our hands. Caregivers, continue to speak out about your experience, advocate for yourself and do not, do not give up on you!

“Before you give up, think about why you held on so long”

First blog post

January 24, 2017 by Heather Oglesby, posted in Caregiver Statistics, Data, Legislation, Health and Wellness, Overview, Spiritual, Systems of Care

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!