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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 Battle Wounds Caregivers Carry!

There is something profoundly impactful, deeply painful, and difficult to discuss that caregivers hold inside.  It does not matter what kind of caregiver someone is, they will have battle wounds that are entrenched in their memories.  There are things that are seen, felt, and experienced in caregiving that can leave a lasting impression on caregivers’ lives.

My caregiving experiences have stemmed from from both of my children, and I have traumatic memories from each.  With my son, it was the moment the doctor took my hand in his and said my baby was dying, and may not make it through the night.  He called for the chaplain, and I felt like the breath had been taken from me.  I was only 20 years old, and still naive.  I had never foreseen this as a possibility because I had only envisioned a healthy, happy baby in my arms.  I felt completely alone as my only partner was my abusive ex-husband, and there was very little solace, if any, found in his arms.

I called my parents, and broke down on the phone.  It all happened so fast, but the image of my baby with his bloated blue belly and yellow-green skin is still as clear as yesterday.  His system failed and the liver could not filter toxins out of his system.  He was severely jaundiced and his bilirubin toxicity was at brain damage levels for days.  This was 15 years ago, and now, my son is here with me, a healthy teenage boy.  He has suffered some frontal lobe damage which has led to many complications, but he is here.  The memories will plague me forever and it is something that even therapy cannot seem to get rid of because there is so much trauma attached.  This is just one of my many battle wounds.

From my daughter, I have many because she has been through three open-heart surgeries.  However, the memory I will discuss right now is not from one of those surgeries, but from a heart catheterization.  These procedures were different, and we were able to go with her to the catheterization and stay with her until she fell asleep from the anesthesia.  When she was 2, she had one of these prior to surgery, and we walked with her.  She was crying, and despite the medication they gave her to relax, she was far from it.  I knew she would fight, but as the anesthesiologist brought the mask towards her, she let out blood-curdling screams and fought so hard we had to help hold her down.  I remember stroking her hair, and telling her she would be okay and we would see her soon.  But, she fought until the anesthesia won.  Then, she was asleep, and we left with sounds of her screams still echoing in our ears.

I couldn’t help but wonder if she would remember it, and be angry with me for allowing them to make her fall asleep.  She struggled with sleep until she was 5, always having to come to bed with me, and I think she related sleep to surgery subconsciously.  She is doing well at 9 years old, but she still has a special heart and we do not know what her future will bring.  I know these battle wounds do not compare to the ones carried by my children.  They have both had to fight so hard, and so early in their lives.  However, they still haunt me.  I can still see these memories so strongly, and the pain I feel when I think of them is as gut-wrenching as they were the day they happened.

Caregivers do not always discuss the burdens of pain and the memories of heartache they carry, but they are there, and each caregiver has them eventually.  They all watch loved ones suffer, and they are subjected to painful moments that may haunt them for their lifetime.  This is another reason it is important for caregivers to have an outlet.  Writing in a journal, speaking to someone, spirituality, exercise, or some way to work through the pent up emotions that come with this important job are crucial to retain mental health.  Do any of you have a memory that you consider a battle wound of caregiving?

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The Caregiving Concerto!

No one tells you this when you become a caregiver.  In fact, this is one of those things that just seems to happen and takes on a life of its own.  There are so many aspects of caregiving that can be overwhelming, but among them is the concerto that is formed as various experts take on roles in the process, stepping on toes, and leaving a wake of destruction.  From the well-meaning family members and friends who check in and offer advice from miles away despite not having any part in the caregiving, to the various specialists, the concerto builds.  This can include social workers or aids, the case workers, therapists, psychiatrists, physical therapists, and the general practitioner.  Everyone has a specific note to play and they all create a massive concerto, but for the caregiver, this is one piece of music that is disconcerting.

Unfortunately, the many voices that trample over each other can do more harm than good if they are not in tune with each other, and the caregiver can be forced to compose in order to keep the peace and to provide the patient with proper care.  This is especially a problem for cases where a patient has many problems and needs care from many specialists, or in cases where there are large families with a lot to say.  In many cases, these families will have more to say than to do because they think this caregiving from a distance, in some way, may alleviate some guilt from not taking on a stronger role.

Either way, the caregiver must handle this additional stress, and sometimes, no matter how hard they work, they can never get the harmonies right.  For those caregivers, or soon to be caregivers, who are in a position like this, realize, it is not always going to work out, and find your voice.  When there are too many people involved, let them know they need to learn to work together for the patient’s sake.  If there is unwanted advice from family, let them know that while you appreciate the advice, you are the one who is with the patient around the clock, and you would prefer they support you and the patient in the choices you make.  Do not be afraid to advocate for the patient and stand your ground if you feel things get out of control.  Sometimes, if you have a caseworker, you can get help with the organization.  Caregiving is never easy, and this is one more aspect that can drum up frustration.  If it gets too difficult, perhaps a meeting of the minds can put everyone on the same page.

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What is Often Left Unsaid!

The art of caregiving is truly complex.  The web it creates can be beautiful, intricate, and shine in the light of gratitude and love.  It can also be dangerous when organization is lost, emotions are high, and chaos ensues.  Yes, caregiving is truly an art.  Those who have been in the process for a long time have created rituals that keep things running smoothly.  The medications may be organized and placed methodically in weekly pillboxes, color-coded, and always refilled on a specific day.  Appointment books or cell-phone planners may be filled with appointments, information about each surgery, symptom, and complaint tucked away somewhere to be readily available.  The insurance letters filed by all of the strange and convoluted forms from privacy policy additions to policy changes that make no sense.

As people become accustomed to the role of caregiving and as they have mastered each aspect of it, down to the science of what makes the patient happy, what keeps them cared for while feeling loved, it becomes difficult to let go.  These caregivers have the web that is neat, beautifully and lovingly spun to sparkle in the moonlight and catch each bead of dew in the morning sunlight.  So while respite is needed because this job is also incredibly exhausting, it is almost too difficult to step away.  Letting someone else take the reins, even for a few hours removes the meaningful dance of caregiving from their day, and the life of independence that was once enjoyed seems alien.  Even if family could come in to provide a week vacation, their mind may linger in the home where their system is being butchered by amateurs.

This is one aspect of caregiving that is very difficult for caregivers to realize and accept.  They are no longer free at this point.  They have become so entwined in living their lives to provide for others that they do not know how to let go enough to live for themselves.  This begs the question of what becomes of the caregiver when they no longer have someone to care for?  It is inevitable that caregivers will eventually resume their lives, but can they find fulfillment again?  How long before they can live for themselves without the gaping hole that is left by the loss of caregiving?  It is like the empty nest syndrome but on a different level.  This is a problem that will need to be addressed as more people become caregivers for extended periods and then must cope with the aftermath.