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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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Importance of Imperfection!

It can be difficult to realize that we all make mistakes and it is okay to do so as a caregiver.  There is a level of expectation that we often hold over ourselves as we embark on each new adventure.  Whether caring for elderly, mentally ill individuals, or other ill loved ones, challenges will rise, and we wonder whether we could do things differently.  There are always going to be those moments where we question ourselves, and consider whether our decisions have had negative impacts on the ones we care for, but this needs to stop.

As caregivers, we take on this superhuman quality, and we think we must do everything without fault, but the reality is, we are human.  Mistakes happen, and it is expected.  We do not receive a handbook, when we become caregivers, that lays out the specific challenges we will face, the personality of the individual we will care for, and the various ways to handle each situation as it arises.  As much as I wish that handbook existed at times, I realize the journey without one has its rewards.  I have learned how strong I can be, how resilient, and especially how creative I can be with problem resolution.  I have also learned to embrace the imperfections that make me who I am.

While there will always be those moments of questioning that follow tragedy or bumps in the road, the more that we can accept our own faults, the more open we will be to caring and loving those we care for, and ourselves.  The sooner this understanding happens, the easier it will be to move past the blame, and guilt that can only weigh down any progress of living.  Caregiving is difficult enough without us getting in our own way.  So, the next time a problem arises, remember to accept any imperfections because they are what make us human.

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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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How Should Caregivers Feel?

This is a complex question that should not even have to be asked.  Yet, caregivers are often placed in a situation where they feel they must come across a certain way around others.  They must be strong and able to handle each challenge without breaking down.  They have to remove any feeling of resentment because that would be wrong to feel and others may judge them.  In fact, they should feel blessed to be caregivers because it is an honor to help a loved one, a friend, a patient, a child, or whomever they care for each day.  So, how should a caregiver feel?

A caregiver should feel however they feel.

It is wrong to limit the emotions a caregiver is allowed to feel because caregiving is one of the most difficult tasks a person can take on.  The dynamics can cause a plethora of emotions depending on the relationship between the caregiver and the cared for.  A caregiver may resent cleaning up vomit or diarrhea each day, and not consider that aspect of caring a blessing.  This is perfectly fine because emotions cannot be swept aside or locked away.  A caregiver could feel their life is falling apart around them as they watch a loved one gradually lose touch with the world around them until they become a mere reflection of who they were.  This is natural.  Caregiving is difficult, painful, heartbreaking, and traumatic at times.  Caregivers will feel stressed, burdened, and overwhelmed.

The good news is that in many ways, caregivers also get other emotions that will make up for the rest.  Sometimes, they get to connect with a loved one on a deeper level.  Perhaps, they find a peace in knowing they can provide care that is better than care from a stranger.  A caregiver may find strength in the role of carer because it gives them a purpose more meaningful than what they have had in other areas of their life.

The most important thing people can do is to recognize that if you are on the outside of caregiving, but looking in, you need to respect the feelings of the caregiver.  Judgement should never be passed on those who devote their life to the caring of others.  If anything, listen to them, validate them, and support them.  Sometimes a caregiver just needs to know they are recognized, and sometimes they just need to be left alone.  Respect their wishes, and provide relief every now and then if you can.

For those caregivers, do not hide your feelings, and do not feel like you are wrong to feel anger, resentment, and guilt.  Your emotions are yours, and you should own them, feel them, validate them, and when you are ready, move past them.  This is part of caring for yourself, which will enable you to continue to care for others.