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Back to Blogging

It has been a while since I posted to this blog.  I have been a frazzled senior in college, working to complete dual degrees.  I can happily say, I have graduated.  Now I can dedicate more time to the things I am passionate about.  This includes writing about caregiving, writing my books, and getting into a rewarding career.

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The past few months have been filled projects, papers, reading, and senior seminar classes.  I now have a Bachelor of Arts in English, a Bachelor of Science in Business Administration, and a Human Resource Management  Certificate.  It took me six years to achieve these degrees, all while caring for a mentally ill child, and a child with a severe heart defect.  Thankfully, my husband and I make a great team.

I know the difficulties involved in caregiving as I live them each day.  There isn’t a day that goes by where I do not struggle with my son, having to work closely with him, encourage him, repeat myself for the thousandth time, and address his behavior in some way.  He is more work than a typical full-time job at times.  But, he is also rewarding.  When he works hard or accomplishes something, it is that much more impressive, and I am proud.  I am not sure how I managed to work on dual degrees, succeed in leadership roles, and care for my family at the same time, I just know I did it because they are all important elements of my life.

I truly believe that I can use my skills to address the growing concerns that affect caregivers.  I know there are various types of caregivers, from the people like my parents who care for aging parents and my aunt who is battling cancer, to those who care for sick children and the mentally ill.  The battles with personal freedom and care for caregivers, respite care, insurance conflicts, and family dynamics are merely a few of the problems that arise.  With an aging population, the need for families to step up as caregivers is elevated.  In the coming years, more and more issues will arise until people begin to address the conflicts of caregiving.  While it is rewarding for many, that does not erase the challenges that must be faced daily, and the toll this can take on families.  It does not change the lack of resources and need for advocacy when a family is thrown into a serious situation they do not know how to handle.

Now that I have graduated, I fully intend to utilize more of my time to explore these challenges.  I will look at angles from personal stories, to in-depth looks at various forms of advocacy and the agencies involved.  It is time to face the elephant in the caregiving room!

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Women as Caregivers

I posted this to my other blog a couple of months ago, and it was quite popular.  I think it is important for women to read, and I wanted to post it here as well since this page is about caregiving.

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There is a quiet that lies within a woman, at the base of her being. This quiet is not a lack of sound, but a lack of fear, pain, and worry. I know this place exists within me, but I had abused its existence. I trampled on it with the chaotic dances of worry that filled each corner of my day. I allowed my soul to be blackened by irrational fears that made their way into the few moments of sanity I had left. I had fallen into the pit of modern humanity where I was tainted by the current world of separation from the divine and nature. I pushed my seat of quiet so far below my consciousness that I could not seem to reach it. It called to me from dreams and I longed for it when my day seemed filled with endless moments of suffocated being.

Women as caretakers, whether caring for children, parents, other loved ones, or patients, tend to place the cared for in front of themselves. It is a state of martyrdom that becomes all-encompassing, and even through the sheer exhaustion, comfortable. The endless moments of caring for others, despite the stress involved, allows the caretaker to avoid the self. I could avoid looking for that hidden piece of quiet because I was afraid of being whole. This sounds insane for sure, why would one not want to feel complete and whole? Because it is easier to mourn the loss of one’s soul than to face one’s truth. There is a lot of work to be done to find that quiet space. Like a hoarder of physical items, I have hoarded unnecessary fears, painful memories, and enough worries to render the average person mentally disabled. To find myself, I had to clean up my mess. It took time, but the real me with dreams and ambitions lived beneath the layers of baggage. She was there, and I found her. I found myself as a person existing beyond caregiving.

While this may seem like an unusual occurrence, I think that many women who live as caretakers fall into this abyss of confusion until it is safer to remain there. Then, the idea of ever leaving the womb they have fallen into is terrifying. Unfortunately, this leaves many without a solid foundation or a connection to a deeper part of themselves. They are lacking one of the greatest gifts they have been blessed with. This is when the journey must begin, because as each bit of debris is removed from oneself, the soul becomes lighter. A total cleansing can make one free, and a free soul has a greater potential for touching the divine that lives within themselves. They connect through inspiration and discovery. I survived this process, and came out stronger, but so many caregivers are caught in this pit, forgetting who they are. It is crucial to reach out to them, and help them to see that they are beautiful people and should not sacrifice who they are to be a caregiver, but supplement who they are.

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CHD Awareness Week: From the Heart

(I am posting this on both of my blogs in the hopes to reach many readers because of the importance of the topic.  I apologize if you are subscribed to both and get this twice. )

Many may not know this, but this week is incredibly important.  February 7-14th is Congenital Heart Defect Awareness Week!  Plenty of information circulates to prepare parents for down syndrome, cleft lip, diseases caused by not vaccinating, and autism, but are you aware that nearly 1 out of every 100 babies is born with a heart defect.  Many of these defects are minimal and may even correct themselves, but there are also many that are life-threatening.  With advanced prenatal care, most of these defects can be caught in an ultrasound, before the baby is even born.  However, in our daughter’s case, they missed it many times.  In fact, after repeated ultrasounds because of an inability to see one side of the heart, they wrote 4 chambers down, despite the fact that she only had half a heart.

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My daughter was born with Hypoplastic Left Heart Syndrome.  This means the left chambers of her heart were small and non-functioning.  She was not even diagnosed until day 12, and she had her first reconstructive open-heart surgery the next day.  Going from being a regular parent to one caught in a whirlwind in the cardiac intensive care unit (CICU) is overwhelming.  Learning about the complex nature of this defect, and the special needs that a child with this defect has is terrifying.  I felt shock, and I was always worried, watching each beautiful breath she took with gratitude.  I learned how to read the machines and what her sat requirements were.  My husband and I created medication logs and we documented her life for months.  We became caregiving parents.  Between this beautiful new child with a host of complications and a mentally ill child, we were exhausted, but we survived, and our little girl is 9 now.  She has survived three surgeries, and each year, I speak about her condition to alert people to this common defect.  1/100 is a high number in my opinion.  Much higher than the current statistics for other common defects like down syndrome.

Knowledge is power, and I can say if you feel something may be wrong with your child, be adamant in getting a doctor to listen.  It took 6 visits to get our doctors to finally admit us.  My daughter was diagnosed past the date where most will die without treatment.  She was in the lucky 5% that survive past 10 days.  This is incredible to me.  The most difficult aspect of her condition that I live with each day is that the future is so cloudy.  We have been told her heart will eventually wear out as it is working twice as hard, and she has had so much work done, she will require a transplant at some point.  This is a fact, but one that I try to forget.  I can often pretend she has no problems as she acts like a typical 9 year old with a bit of an attitude at the moment.  It is when the threat of a cold looms over us, or when she wants to do gymnastics moves around the house that I begin to panic.  It is when she gets overheated so quickly in the summer that I want to squeeze her tight and never let go.  I know her life has been borrowed by skilled doctors, and I fear what the future holds.  This is why I want to bring awareness about the importance of having knowledge about heart defects.  We nearly lost our chance to know this incredibly intelligent little girl, and I hope our story can help another family get that same chance.

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What No One Tells You About Caregiving!

No one tells you about the person you will care for in a detailed way.  There is no handbook that is specific to the person.  For those people who are used to directions, handbooks, and Google to find out how to do something, you will not be able to get the answers you need.

No one tells the parent of a mentally ill child how to listen to them and understand.  No one explains how the illness will differ from child to child and how the doctors will not always be there for you.  No one explains the time that is spent on appointments, medications, hand wringing, and tears.  No one can begin to explain the stress that will be felt as the child shatters every possible shred of patience left in your heart.  No one can detail the profound love you will feel for the child who is hurting, as you hurt along with them.

No one tells the middle aged children who have chosen to care for their aging parents how their life will change.  There is no way to prepare you for the loss of privacy that will heighten frustration levels.  No one shares the devastation that can be found in relationships between family members as the responsibilities become uneven.  No one can tell you how tragic it is to see your loved one shrink before your eyes, forget who you are, or become a shell of who they once were.

No one can prepare a parent for the image of their child after heart surgery.  The chest tubes and the screams are never fully explained beforehand, and how it takes nerves of steel to not break down and cry.  No one expresses the fear that grips your heart when your child falls or becomes sick because they may have a complication with their heart.  No one tells the parent how they will see so much pain, they will wish they could rip their own heart out and give it to their child.

No one tells the caregiver of a loved one with cancer about the hours of holding their hand to give them courage despite the fear inside.  No tells you about the wishes that will be made in secret as the vomiting begins and the hair is lost.  No one tells you how deeply these memories become rooted in your cells, always a part of you.  No one has a handbook to express how your loved one will handle each step, and how you can best support them.

Caregivers are fighters because they tread into the unknown.  They are not told what will be because no one can know for sure.  Each journey is different, and each one is full of life, tragedy, hope, loss, love, fear, and so much more.  No one can tell you what they don’t know, but they can prepare you for some of it.  Caregivers need to unite because while they care for others, they need to have someone to speak with when it gets to be too much.  They need someone who can empathize with them, listen to them, and never judge their reactions.  There is so much left unsaid, it is time for the dialog to begin.

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Why are Sufferers of Mental Illness Still Marginalized in Society?

I have grown up around mental illness as a reality in my life.  My mother is mentally ill, and as a child/teen, I had to grow up fast and learn to accept the responsibilities of a child with a mentally ill mom.  Granted, my perceptions were still young, and I thought faking being sick so I could stay home with my mom would keep her from attempting suicide.  This is not rational because it also meant I believed if she did attempt suicide and I was not home with her, it would be my fault.  This is how I, as a child viewed the struggle, until I fell apart myself.  Then I realized that no one could necessarily have an affect on a truly suicidal or heavily depressed individual.  The care these individuals require goes beyond what can be provided at home.

I went through my own bouts of depression, and now, my son is mentally ill.  He has many illnesses, and it is very difficult to care for him sometimes.  What surprises me is the way in which society still marginalizes mental illness sufferers as though this minority group’s needs are not important.  People with mental illness are still treated differently and others make wild assumptions about them.  Last I checked, this group of individuals is actually pretty large.  According to the National Institute of Mental Health, 18.6% of U.S. adults have some form of mental illness.  This is nearly 1/5 of U.S. Adults.  How can individuals continue to judge the mentally ill when they take various faces and are all around you.  These people are homeless, wealthy, middle class, poor, black, white, Asian, Hispanic, young, old, and any other descriptive word you can throw in there.  They are teachers, doctors, police officers, cashiers, taxi drivers, friends, co-workers, family, and acquaintances.

On many occasions when I have had to relay my sons story for the millionth time to a new doctor or facility, I have had to deal with the judgmental insinuations that our family must be messed up.  Our family is broken at times, but it is because we struggle to handle the mental illness while living our lives.  The mental illness came first.  Even if we did have family problems, why should others judge us?  What should be more common is empathy.  Our family hurts, we struggle, we fear the future for our son, and we care for one another.  We are a family who needs help because mental illness has intruded on our lives.  We deserve to have treatment without judgement.

The college student who is cutting herself to erase her pain, the high school girl who starves herself to have control, the men and women who struggle to survive from growing up in abusive homes, the soldiers who come home with PTSD, the people who develop schizophrenia, the people with chemical imbalances, the woman on the bridge jumping to forget the rape she endured.  These are all people who are suffering, and they should not be treated as less than human or with a lack of dignity.  Why is mental illness scrutinized so gravely, and why are others so quick to judge?  Why is it so difficult to find help?  Why is insurance for mental illness so limited?  Why can’t we, as a collective group of people, demand change?  Why, as a leading industrialized country, can we not care for the people who need help with the compassion they deserve?

Obviously, things need to change.  I find that caring for a mentally ill child is a caregiving role that is exhaustive.  It is a 24/7 job that requires a lot of work, patience, appointments, medications, and vigilance.  I am tired of the prejudice, the assumptions, and the lack of resources.  I also know many who need help go without it because of shame, lack of understanding, lack of insurance, and fear.  We need to change the perception of mental illness now, and become advocates for the mentally ill.  We should never allow people to suffer in silence.  Mental illness is real and it is prevalent.  It is time to wake up America!

Resources:

http://www.nimh.nih.gov/health/statistics/prevalence/any-mental-illness-ami-among-adults.shtml

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Even Communication in Medicine is Sterile Now!

Growing up, I would watch Dr. Quinn Medicine Woman, and I read Little House on the Prairie books.  Life moved at a slower pace in both of these settings, and this gave me a warped judgement of how medicine really was.  However, even the more modern medicine I received when I had to go to the pediatrician was decent.  The doctor seemed to listen and care. However, something happened over the years, and the changes are affecting everyone.  As insurance issues arose, greed and business maneuvering became a major component in healthcare. Laws restricted healthcare, litigation was overabundant, and the humanity has been replaced by a sterile environment which prioritizes other concerns as higher order concerns over the patient.

There are still great doctors out there who operate within the confines of their job to provide incredible care.  It is becoming more rare though as medical students are rushed through clinicals, and doctors have to ensure they can meet the needs of the masses.  Everything begins in the way students are taught the science of the body instead of the art of the body when both are equally important.  To understand a patient’s psychological state through communication, a great deal about their physical manifestations can be revealed.  Yet, the patient is often ignored, or targeted questions are asked without time for the patient to speak freely.

Some medical programs, like the one at Columbia University, are now including a more artistic approach to medicine, helping students to gain the typical medical knowledge needed while retaining the ability to see the humanity in medicine.  This allows them to feel the empathy needed to connect with patients and to grasp concepts that have been lost along the way.  This is a new trend which will hopefully continue, but in the meantime, many people are caught in terrible situations, caught in a sterile medical world without a sense of sympathy or empathy.  The walls may be as cold as the people attending them, and this is terrifying.

When patients and caregivers are faced with this world, where a phone call to the doctor becomes phone tag with voicemail and nurses, and care is placed on the back burner until insurance referrals can be completed, the world becomes more lonely.  There are so many who go through this, yet while they endure this sterile dilemma, they feel as though they are alone.  Sometimes, an entire day or longer can be spent negotiating care, handling prescription authorizations, and dealing with fine print.  Then, when this system is figured out, insurance changes, and everything must be repeated.

Caregivers and patients want to feel warmth when they are seeking care, because illness is suffocating enough.  The patient often loses a great deal of control and dignity in their life, and a reassuring smile, empathy, and 5 or 10 extra minutes of a doctor’s time can make them feel more confident in their care.  A happier patient should lead to a higher potential for recovery if recovery is possible.  A stressed and lonely patient may have more problems beginning with psychological ones.

So, where do we go now?  How can we make changes?  It is obviously not an overnight process.  There are games played between healthcare and insurance companies with a governmental referee, and the game is in overtime.  There are resolutions to be had, but we are overdue.  If more medical schools implement programs to encourage development of empathy to coincide with medical training, there could be positive results, however, there needs to be changes implemented in the government and in insurance companies as well.  Priorities need to change, and people need to demand better care.  The more people who stand up or speak out against these injustices, the more likely change will eventually occur, even if it is in baby steps.  What concerns do you have, and do you see options for change?  I would love to hear the opinion of others on this truly important topic!

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The Caregiving Connection, a Blessing in Disguise!

There are so many aspects of caregiving to discuss, and most of what is considered the elephant in the caregiving room is negative.  However, there are the good aspects of caregiving that are often overshadowed by the negatives, and never mentioned or forgotten.  Everyone’s experience as a caregiver is different, but this post is going to cover the beauty in caring for others.

My parents are often mentioned because I see the caregiving they do, and I speak with them about their lives, their sacrifices, and the blessings they have.  Despite the tremendous amount of work they do, they remain positive about their lives and the future.  There are moments where they may struggle and question the direction their lives have taken.  There are days where they just wish for a break because they are exhausted.  But, they have also expressed a profound feeling of gratitude for their lives.  They feel better knowing their loved ones are receiving proper care.  They know that as long as they are caring for them, they will be loved and provided for.  They want to make sure there is a positive, nurturing, family connection because they do not look upon them as a burden, but as humans.  This is where the beauty and blessings of caregiving lives, in the hearts of the carers who give because they truly care.

Another story of caregiving that has been a blessing, is the care my husband and I shared after each of our daughter’s open-heart surgeries.  After her first surgery, she had her vocal cords nicked and we couldn’t hear her cry.  My husband had to work full-time, and when he came home, we slept in shifts so one of us would always be awake with her.  We kept logs of medication dosages, and feedings.  She had to be on oxygen, but we could not allow her oxygen saturation to go above 65-70% because it could cause severe problems.  We were exhausted, but we also had so much time to spend with her, getting to know her.  My husband took a strong, active role in her care, and I saw their bond grow.  It was the countless hours of care that helped us to develop an even stronger connection. I am so grateful for those moments.

Caregiving is often thankless, but we can find meaning and gratitude in the connections that are made.  The truth is that caregiving is an act of human kindness and love.  It is a sacrifice, but it is rewarded in smiles, in the time spent with a loved one, and in the human connection that is often forgotten in our fast-paced world.  Caregiving speeds us up with lots of work to do, but it also slows us down when we realize the mortality that faces us all.  It is a blessing in disguise.