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. 

The Things that Make You Go “Thrive”

“Do the difficult things while they are easy and do the great things while they are small. A journey of a thousand miles must begin with a single step.”  -Lao Tzu

Why do I love the word “thrive”?  I define myself by this term often and every step I take in life is encapsulated by the value I place on its meaning.  The word “thrive” means to grow vigorously, to flourish and prosper and to press towards a goal despite the circumstances.  I believe the last part of this definition is what resonates with me the most, especially when addressing well-being.

Caregiving is traumatic, challenging, filled with long-suffering and sacrifices.  There are other situations in life that can have a similar impact and may be relatable to the caregiving scenario.  But no matter what the adversity is, the characteristics of a person who decides to thrive is truly honorable.  What makes you stand-up and fight for your life and thrive, in spite of?  It can truly be baffling to some, amazing to others, and inspiring to many.  So taking the time to identify the things that make you “thrive” is imperative.

Here are the top three things that make me go “thrive”:

  1. My Faith: I don’t know where I would be without my faith in God;  in something higher than myself.  The belief in something I cannot see but just know is there, has kept me through many hardships in life.  I have watched situations resolve itself, doors open, and blessings rain down on me, all because I choose to rely on faith. I believe that there is a purpose for every single human life walking this earth.  But in order for purpose to be birthed out of us, we have to go through an experience.  Those experiences shape our own personal cause in life.  Faith is what is hoped for and yet not seen.
  2. Mental Strength: I like to describe this as mental integrity.  Managing our thoughts is the key to the outcome of our emotions and our actions.  What we think, elicits an emotional response and can cause a physical reaction.  When life throws trials, problems and challenges my way,  I have to pay attention to what I thought about those scenarios, in order to confront any absolutes that have been hibernating within my mind (such as  “shoulds”, “oughts” or “cant’s”).  It’s completely valid to get angry, frustrated, sad or whatever emotion floods from your heart.  But then what?  If we were to sit in any negative thoughts or emotions for a period of time, what would be the consequence?  We must decide that we are a priority and worth every opportunity, blessing and gift life has to offer. We have to shift our thinking in order to thrive.  This is a deliberate commitment to ourselves and will guide our steps that are conducive for growth and prosperity.
  3. Desire for Joy: I love to be happy. I love to smile, to laugh and to enjoy all life has to offer.  Who doesn’t? (don’t answer that).  This deep desire has never left me, no matter what has entered into my life.  The caregiver experience has truly tested the authenticity of this desire.  The amount of time I have spent fighting major systems of care, advocating for my mother, advocating for myself, could have stripped me of my joy and hope in humanity.  When doors closed on me, opportunities were lost, friends deserted me, finances strained, I tapped deeply into that desire and made a “mental” decision to fight for it.  I fought and still fight to keep that jubilation in my life, no matter what I see in front of me.

In summary, these are the things that make me go “thrive.”  My faith has protected my mental integrity and leveraged the joy that resides within me, which in turn, has caused me to “grow vigorously.”   I encourage you to evaluate what has given you the superpower to flourish in spite of.  Once you have identified it, build your life’s foundation on it so that when a storm blows your way, you do not plummet, but instead rise on the cloud of your potential and land firmly on your purpose.

 

Thrive

 

 

 

 

Moving from Fear to Fierce

“The fear of facing your fears is harder to overcome than the fear itself.” 

Recently, I have been pondering the origination of fear, in general and specifically to me. Have you ever examined your life and wondered how you survived some of the most traumatic challenging events?  I try not to look back too often and keep a forward-focus mindset.  However, when trials reappear in my life, I will take a look back on conquered obstacles, painful transitions and successful victories.  I believe in the ability of human resiliency and the power of evolution through life’s fiery trials.  But there’s no doubting the deep rooted feeling of “fear” when moving through the storms of life.  Where does fear originate and how can we leverage it so we are positioned to be fierce in the face of opposition?

Did you know there is actual science behind the feeling of fear?  Yes, scientist uncovered a gene that is linked to fear, the stathmin gene. More research is being conducted on this gene as it relates to trauma, memory and the ability to recover. For this blog purpose, I want to focus on the fear we learn.

According to scientists, people are born with innate fears and others are learned from childhood.  I can remember the many fears I have picked up along my journey of life; including the fear of abandonment, fear of loss, and the fear of not having enough to survive.  These emerged due to direct exposure to an event.  But somewhere down the road, they were diminished by an approach to life that created an internal drive to be a fierce conquerer. Below are just three of the approaches I have taken, but I encourage you to assess your own strategies in facing your fears.

A.  Change your thoughts: We operate in life by many “shoulds” and “shouldn’ts”.  Have you unpacked these?  Where did you learn them, who taught you them and can they be changed? Are they contingent upon roles that have been assigned to you based on gender, age, race, ethnicity or class?  Question them, think critically and then enroll those thoughts into a transformation bootcamp.

I have challenged these roles my entire life that were placed on me by my parents, friends, church affiliations, different racial groups and different classes.  Honestly, by challenging these societal roles, I have become more free, liberated and fierce.

B.  Do the opposite of how you feel: Are you intimated by something or someone?  First, ask yourself why and then do the exact opposite to how fear would dictate.  Are you interested in a person, for friendship or otherwise, but feel the fear of rejection, or future failure?  Then make an attempt to establish the relationship anyway.  Talk to them, get to know them, be proactive.  People are brought into our lives for a reason and allowing fear to dictate the outcome of that reason is detrimental to our evolution and purpose.  Are you invested in a new career, a new skill or trade or want to go back to school?  Fill out that job application, write that school entry essay, take those GRE’s.  Enact the exact opposing step to fear.  What is the worse that “could” happen.

C.  Don’t let set-backs keep you back: I have done the above two steps often in life and I have not always come out on top.  I have lost friendships, jobs have ended, relationships have soured, money has been lost and I have had to do major resets.  But guess what?  I kept going, continued to challenge my “shoulds”, and refused to succumb to the set-backs.  I looked at every challenge as a stepping stone, not a failure or reason to sit down on my life.  No one is promised a problem-free life, filled with just blessings and miracles.  We all have varying levels of barriers.  It is a choice as to whether you are going to knock them down, let them define you or block your opportunities in life.  If you take a step back, take 4 steps forward and you will find that you are operating in ferouciosuness instead of fear.

Finally, think about the fear in your life and the level of control it has on your present and future endeavors.  Choosing to address it, conquer it and change what you have learned will be the pivot point in reaching your destiny.  Operate boldly, move forward in confidence and go after that which you desire.

Fear

 

Road-Map Slam-Dunk

“If you don’t know where you are going, you’ll end up some place else.” – Y. Berra

Many times in life I have been derailed from my goals or dreams due to unexpected events, family emergencies, failed relationships, and so on.  However,  what has never left me is the drive, the motivation and the perseverance to obtain a vision that resides within me.

I currently work three jobs in addition to caring for my mother with Alzheimers.  As I get older, I am becoming more intentional in my decision making and planning.  I know what I want and have become more diligent with the level of effort I am putting forth to enhance my lifestyle, manage life’s stressors and press towards my goals and dreams.  It does not matter how much you have going on in life, there are choices and you do have control over what comes in and out of your life.

Below are a couple strategies I have introduced into my life in order to chart out my Road Map to Success:

A.  Develop an Interactive Online Vision Board.  I use Dream it Alive.  This site will assist you in navigating short term goals in every area of your life, from career, leisure, relationships, spirituality, physical health, etc.  You can order a tangible copy of your vision board once completed.  I place mine on my bedroom mirror to keep me focused on my future.  Revisit your vision board every couple months and when your goals are complete, develop new ones. Keep it going, keep it alive!

B. Plan It! I have three separate calendars I complete each month that charts out my work schedule, my workout/health coaching schedule and my mom’s ongoing medical and caregiver schedule.  I manage those three separate calendars, making sure I keep balance and ensure I am prioritizing my personal health and wellness.  I revisit the calendars at the beginning of each week and make small adjustments as needed, without sacrificing my own needs.  (note: do not feel guilty in saying no or enacting boundaries)

C. Look for Opportunities of Growth! We will never know it all in life.  We always should seek to develop, enhance or strengthen a skill in order to achieve all our goals.  I am continuously looking for trainings, certifications, or skill-building events that align with my vision.  We are evolving creatures who need to expand our abilities in order to strengthen humanity.  Existing in your current state will not only make you unhappy and unfulfilled, but also will not benefit society as a whole.

D. Give Back! Did you know that when you decide to give back to someone, to a community or organization, you actually grow?  Try it, if you don’t believe me.  When you share your gifts with another, you actually are strengthening  your own abilities and enhance your existing skills.  Those whom you serve will have “asks”  of you that cause you to rise-up and show-up.  When you show-up, you validate who you are and what you stand for.

E. Enlarge your Community! Where would we be if we only knew one group of people?  One of the most rewarding and beneficial things I have done in my life is to travel the world.  I have taken the 4-hour climb up Mt. Sanai, Egypt at 3am in the morning.  I have back-backed the desolate roads in Sighisoara, Romania and volunteered in the largest slums and refugee camps in Kenya, Africa.  I’ve visited over 20 countries and have been to almost all 50 US States and 13 US territories. Through the experience and emersion of different cultures, I have learned more about myself, the world and humanity.  My vision has become larger and my purpose is more directional.  Travel in or out of your country, or even just your current community.  Learn from others and expand your knowledge of other cultures.

When all else seems not to be available to you, have faith, dream it, write it, plan, and watch what you thought was impossible become possible. You have only one chance at this life. Live it on purpose!

 

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Pain Recycled, A Wellness Approach

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

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

 

 

The Portrait of a Caregivers World

“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”

From Passion to Prevention to Purpose

Cycling as always been a great outlet for me and my Passion.  I started my cycling journey in college, when I was double majoring in Sociology and Art and also working full time to put myself through school.  I remember thinking about the perfect outlet to release the stress and sustain my love for the outdoors.  How could you not love feeling the breeze on your face, the ground beneath your pedals and the view ahead of you, waiting your arrival.

When I became a full-time caregiver for my mother with Alzheimers, I immediately returned to the activity I loved, biking.  What is it about biking that frees your soul, quiets your mind and soothes your heart?  For me, it gives me an opportunity to observe my surroundings, listen to the birds, and take in the beautiful skies above me.  It gives me the time away from the caregiver role and provides me the opportunity to express me, a woman full of joy and driven by exploration.  It is my passion.

How did my passion turn into Prevention and prevention of what?  After a year of cycling in the local Georgia parks, trails and roadways, I realized that I was biking over 70 -90 miles a week.  My bike and I became one and I was receiving many health benefits from it.  I decided to take some indoor spin classes and to my surprise, I loved it.  My focus shifted from enjoyment to prevention, specifically prevention of dementia or any chronic disease.  Watching my mom lose her life to several incurable diseases at an early age, shook my world.  I knew I needed to start now to address my health before my life was shorted by something I could have prevented.

While the exact calories burned on a bike varies from person to person, cycling burns as many calories as running and is much more forgiving on the joints.  The many benefits include improved cardiovascular health, boosts energy, builds muscle and improves coordination.  What I was most interested in was the connection of cycling to brain health, especially in women.  Women are two-times more likely to be diagnosed with Alzheimers than men and we don’t know why.

Research after research proves that daily exercise can prevent cognitive decline, sharpen memory and learning and improve overall brain performance.   However, what are the benefits of outdoor cycling or indoor spin classes on the brain? According to “Biking for Your Brain”, Cycling actually builds a bigger, more connected brain. As we pedal, we increase healthy blood flow to the entire body, including the brain. Pumping oxygen and nutrients into this organ provides a kind of neural fertilizer, creating rich capillary beds in the gray matter and increasing the brain’s capacity to grow, function, and repair itself. Cycling helps stimulate regions of the brain such as the hippocampus, which plays a critical role in memory function.

According to “Better Brain Health: A Priority for Women”, women who had high fitness levels were 88% less likely to get dementia.  Recommendations to consider include varying the intensity of your workout with techniques such as high-intensity interval training (HIIT), in which short bursts of high intensity cardiovascular exercise are alternated with low intensity activity or rest.  Thus, have you ever tried HIIT on a Spin bike?  What an intense experience.  Recently I took at HIIT Spin class at Lifetime Fitness in Johns Creek, GA with an amazing instructor, Ellen Nicoll.  It was something new and challenging.  My tribe of women that I work out with everyday decided to rock it out and endure a brutal sweat session.  The benefits of trying new physical endurance activities are numerous.  Try a new activity, increase the intensity or duration and develop a community of support in your wellness journey.

This brings me to the last “P” in my blog title, Purpose.  I recently had a birthday and reflected upon my life thus far (as we all do).  My walk has changed, my perspective has shifted and my purpose has blossomed right in front of me.  How did a passion that developed over 20 years ago, turn into a primary prevention approach in my life and now a defined purpose, which is to increase the awareness of brain health in women?

Have you figured out your passion and thought about how that directs your purpose?  It’s all connected if we choose to see it.  Your life is on purpose, literally.  I encourage you to take your experiences, what you love and create a purpose-driven plan to enhance the lives of those around you.  We are a community and can learn from one another.  Teach, give and continue to work towards being whole.

“The whole point of being alive is to evolve into the complete person you were intended to be” 

 -Oprah Winfrey

Three Health and Wellness Strategies for a Traveling Caregiver

If you are a caregiver and have been told a million times to carve out time for yourself, get some respite and seek help, send me a virtual fist bump and try not to bang your head on a very hard surface.  For me, just that I can schedule in a daily shower is a victory and fulfills my health and wellness quota for the day.

However, on the serious side, I have a an earnest desire to prevent this horrific disease called “Alzheimers”, and frankly, all other chronic diseases that plague our world.  If I can just push myself outside the comfortable, while in the present, I will reap in the future, by enjoying my aging disease-free, pain-free and medication-free.

Part of my push includes intense planning and preparation, which is a huge added task to a caregiver, who is consumed with their loved ones’ responsibilities.  We plan their doctor appointments, their routine tests, their medication management, their bedtime schedule, their finances, etc.  We, as caregivers, are the last of the long list of planning that usually fades away into the abyss.

Recently, I attended a Caregiving Conference in Chicago, IL.  In order to attend this conference, I had to arrange months ahead of time.  I had to negotiate the caregiver hours, arrange the time I would be gone with my husband, who works, ensure all my moms medications were filled, and doctor appointments kept.  This list goes along with the negotiation of my paid full-time job, as I needed to carve out time to develop the presentation with my partner, edit slides, draft handouts and meet the dates of the conference coordinator.  I had to find the funds to go to the conference, budget the trip around my other financial responsibilities and plan what I could do and not do while in Chicago.  So exactly where did that leave the time to incorporate the Health and Wellness piece into my travel plans?

Below are three simple tips I am trying to make a habit as a traveling caregiver, so I don’t end up eating cheesecake every night from the hotel restaurant.

  1. Pick up some budget-friendly healthful snacks from the grocery store before you leave that fit right into a carry-on bag.  I stuff a clear zip-lock bag full of nuts, jerky, and plantain chips; enough to carry me through the number of days I will be gone from home.  Your hotel may not be in the ideal location with access to a grocery store, so packing what you need for those airplane and late night munchies will help and reduce vending machine temptation.
  2. Pack a pair of sneakers, at least one set gym clothes and download some body-weight only exercises.  Most hotels have small gyms, but you really do not need to leave your room to get your heart rate up.  I always tend to overpack for the gym, as my goal is to go everyday while I am on travel. However, travel lethergy is real, especially when you have left one busy life behind and have a compromised immune system.  Keep it realistic and simple.  One outfit will suffice for a couple of days.
  3. Ask for what you don’t see, but need.  Finding something healthy to eat at the airport or in a restaurant can be the very last fight you want to battle in the arena.  My partner and I walked around the food court in Chicago for 20 minutes examining the menus for the “gluten-free, dairy-free, everything-free” options.  It just did not exist. As my stomach began to yell at me, I passed Dunkin Donuts and saw those chocolate glazed donut holes.  Oh yes, they were inviting me in like a warm cozy sweater on a cold Chicago night.  My stomach wanted them. I was so hungry.  But I walked back around to the Latino restaurant and told them what I needed.  They made it for me, right on the spot, with no hesitation at all. And….it only cost me a few dollars, $5.90 to be exact.  In some airports where the cities are more progressive and eco-friendly, like Chicago, they have installed Farm Friendly Fridges that include healthy options. These also can be found on local colleges and University campuses.  These are a great option when trying to stay on track.  Check the locations of these fridges before you leave to plan for access and cost.

No matter what role you hold, these are some simple and economical ideas to incorporate into your travel planning.  As a caregiver, I am seeking to stay consistent in my healthful routine, in order to live a life of freedom, rather than in chains to doctors, medicine and illness.  I am making these habits apart of my every travel itinerary.  If you have additional ideas, please feel free to send in comments and I will post.

“Those who think they have no time for healthy eating…will sooner or later have to find time for illness.” ~Edward Stanley

 

 

The Caregiver Community: Healing or Hurting You?

I set my alarm this morning for 4:30am. in order to write this blog about the concept of community. I have been pondering my current “tribe”; the people around me providing support, encouragement, laughter and love.  It is my special community that has evolved around me that has sustained me as my mother’s caregiver.

It has been 3 years, 1 month, 2 weeks and 3 days, since I moved my mother in with me.  Yes, I count every day, week, month and now year, as it is one of the hardest transitions in my life.  I look back many times and wonder, how have I done it.  How have I survived the battles with Medicaid, with insufficient services, with negligent doctors, while working fulltime, starting a business, going to school and taking care of my own health?  The answer always comes back to three things, (1) my faith in God, (2)my resilience and (3) the people who surround me, my community.

When I first started this caregiver journey, I reached out to all the typical players, the Alzheimer’s Association, national caregiving organizations, Rosalyn Carter Center, local faith-based support groups, Emory ALZ Research Center and on and on.  I joined online support groups and chat rooms, seeking the hands of strength and searching for answers I so desperately needed.  What I found was the exact opposite.  Their answers are rooted in the ideology that if you just knew how to be a better caregiver, you would have less stress.  All the tips and suggestions diminish you as a person and only define you as a caregiver.  The so-called “support groups” turn into a depressing, hopeless space of desolation and despair.  It is consumed with caregiver complaint after complaint and excuse after excuse of why their lives are now destroyed and nothing can be done about it.  Its the systems fault, its the incurable disease that only leads to death, its the lack of family support or financial resources.

After spending my first year engulfed in a failed caregiver support system, I started to focus on my own health needs, removed myself from all caregiver support groups, and “smoke and mirror” organizations whose whole function is to protect caregivers.  There is a tagline that a lot of “helping” organizations use, “do no harm!”  Well, all of these groups and organizations were harming me, exhausting me and were not pouring life into my situation.

As I began my journey with health and wellness, I joined small group classes at my gym, enrolled in a Health and Wellness Coaching Certification and a Spin Certification.  A natural occurring community emerged and now, 3 years, 1 month, 2 weeks and 3 days later, I am more resilient, healthier and vibrant than I was prior to caregiving.  The people around me have wrapped their arms around me as an individual, not as a caregiver.  They have created a tool of respite for me, a positive outlet and an avenue to a healthier me.  Their impact on my life exceeds the caregiver role and has forever changed who I am for the better.

When I think of “my community”,  a set of characteristics becomes evident and are what I believe are a foundation for the caregiver community.

Creates a space for freedom
Opens doors of opportunity
Magnifies your individuality
Mobilizes your goals and dreams
Understands your uniqueness
Navigates stress in your life
Initiates growth and potential
Tackles challenges collectively 
Yields Grace and Mercy

If your community is not building you up, creating a space for individual freedom, assisting you with setting goals and priorities for your life, now is the time for that re-assessment of who is surrounding you.  Who and what do you need to evict from your neighborhood in order to grow, to heal and to be whole?

“Devote yourself to your community around you, devote yourself to creating something that gives you purpose and meaning.”   – Mitch Albom