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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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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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Lack of Control in Caregiving!

One of the most difficult issues a caregiver can deal with is the lack of control they have once caregiving begins.  For someone who likes order, keeps a clean home, follows a strict schedule, or has to have control over their life, caregiving can be a shock.  The fact is that caregiving is chaotic.  Plans can be made, schedules adhered to, and the best intentions can be there, but illness does not comply.  Despite the work that goes into keeping order, there is bound to be disorder.

The best thing a caregiver can do is to relax a little.  Realizing that life gains a new meaning when it involves caregiving is a powerful first step.  Some days will be a blur without a moment to catch the breath so desperately needed.  Other days, the caregiver may find a peace in the unplanned moments that bring them closer to their loved one.  There will be difficulties, and feelings of loss can take over when the caregiver realizes they have yielded their control, privacy, and social life.

These may not be an issues for everyone, but in many of the caregiving cases and stories I have read, it is common.  It takes time to adjust to the new life that caregiving creates, and caregivers need to loosen the strings a little and give themselves time to adjust.  The important thing to remember is that as a caregiver, you are taking on a serious responsibility, but also making a difference in the life of another.  You are sacrificing, and gaining something in return.  You are going to fall apart, but you are also going to pick yourself back up.  Caregiving is a roller coaster, and you may not have control over the ride, but you do control how you handle it, respond to it, and any choices you make to change it.

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Who is the Caregiver, Really?

We talk about the caregiver and the life they lead, the work they do, and the challenges they overcome.  But, who is the caregiver?  How many times do they become known as the caregiver instead of by their name.  How often they become known for their tireless work, but not for who they are.  My mother and father are a prime example of this.  They do their work, caring for others, day in and day out, but they have names.  Denise and Larry.  They are human, they are people, they feel, they hurt, and they had dreams and goals.  They used to have a beautiful marriage based on love and passion.  It was stable and strong.  They are now seen by the world as the caregivers.

Denise had a hard life full of abuse growing up.  She was beat down by the people who should have lifted her up, including her father, the man she cares for today.  She fought through her own mental illnesses for years, and our family nearly fell apart, but she found an inner strength to overcome.  She has had many surgeries, and as she enters her sixth decade of life, she aches.  She has many conditions like fibromyalgia and arthritis that cause consistent pain.  She has serious stomach problems that interfere with her life on a daily basis.  But, she is the caregiver for others.  Even on a cold day, when her joints ache and it is excruciating for her to get out of bed, she forces herself to get up.  She is a person who hurts, but others just expect she will continue because she is the caregiver.

Denise had a dream to have a career one day.  She would have loved to go back to school, and if she would have been able to, she may be able to help now that her husband is unemployed, but she devoted her life to caring.  Everyone in the family said she could do it because she didn’t have a job, and now when she wishes she had that fulfillment and could help, the family who said she could do it has turned a blind eye because she is “just” the caregiver.  Her dreams were set aside, and her heart aches for what could have been, while others get to have personal fulfillment, she speaks to me of never being able to have her own life.  Denise is a beautiful, loving person, with unfulfilled dreams, and a lot of pain.  She is a caregiver, but also a human being.

Larry worked hard his whole life to build a bright future and retirement.  He worked for his family, served in the military, and worked his way up into management in various businesses.  He found success in director and VP roles, then became a caregiver with Denise.  He didn’t have a major role at first as he still worked full-time, but after the recession when he lost his job, one challenge after another hit him.  He is also at retirement age, and this makes it more difficult to find a job despite his incredible resume.  He is now working alongside Denise, but all of his work for over 40 years to save money for retirement has been lost due to the recession and the money lost on their house.  They live a very different life now.

Larry is an incredible man who feels his life that he worked for has been stolen.  He gives to caregiving each day, and worries about not having health care.  He struggles with the fact that he has been unemployed for so long.  Larry and Denise both helped to support and help many of the family members who have turned their backs on them now.  They have given advice, their home, and money, but now that they are suffering, they are alone.  These amazing people are human beings and incredible caregivers.  People assume caregivers can just keep going, and people move on with their goals and dreams, but seem to forget, caregivers have goals and dreams too.  They have had to sacrifice, and it would be nice if others could view them for the truly giving and loving people they are.  This is how humanity is reclaimed, by recognizing it in the people who give so much.

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Recognize Your Influence!

When you are a caregiver, it is so easy to forget about yourself.  It is often the day to day activities, stress, and appointments that fill out the moments of your day.  It can overshadow the profound influence you have on others.  Whether you realize it of not, you are making a difference in lives.

Obviously, you are having an effect on the person or people you are caring for, but you affect others as well.  If you have children, they see the dedication and love you give to those you care for, and this leaves an impression on them about what it means to care for others.  You are also, if there are other family members who have moved on in their lives, having an impact on them.  This may not feel like a good thing, especially if you feel abandoned by these family members, but the effect you have on them may change them for the better.

The most important thing you can do is to recognize your influence because you deserve self-recognition.  It is great to be humble, but you should still be proud of the sacrifices and devotion you are exhibiting in caregiving.  It is a hard job, and feeling good about what you are doing can give you the much needed boost of confidence to continue in your role.  Be proud of yourself!

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Caregiving and the Small Stuff!

We all stress, and when you are a caregiver, it can be easy to lose your cool over some of the small stressors, but this can create even more stress.  In fact, caregiving is one of the most stressful jobs someone can have in their life.  When you open your home to aging parents, a sick sibling, or when you are a parent who must dedicate so much time to caregiving and not parenting, you can easily become overwhelmed.  However, this added stress can tax your relationships, and it can begin to affect your ability to function in a healthy manner.

The reason this tends to be an enhanced issue in caregiving is because caregiving brings a higher level of chaos into life.  Caregiving is full of unpredictable moments and often this loss of control means the caregiver seeks control in other aspects of their life.  If the person they care for spills their drink, or loses control of their bowels, this takes away the order that the caregiver has created and can lead to angry responses, arguments, stress, sadness, and so many other emotions.

It comes down to the caregiver needing to recognize that while it is great to be organized and to create order where chaos is, they cannot remove the unpredictability of life.  Surprises, many of them not good, will happen, and they will be frustrating.  However, the caregiver has the power to choose how they will react.  If the situation is stressful, before blowing up or reacting, take a moment to breathe and process.  Walk outside, make a note of it a journal, and then face it.  By removing this additional stress quickly, you can fix it, and redirect your thoughts to something more pressing.  It comes down to choosing what is important to stress about, and what will be a waste of your time and energy.  This will save you and your loved ones in the long run by creating a more peaceful environment.

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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.