0

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.

Advertisements
6

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

0

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!

3

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.