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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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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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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!