Create Change With Simple Gestures!

We live in a time of social expression, but very little personal interaction.  We reach out through texts and social media platforms, but it almost becomes alien to reach out a hand to someone who needs us.  As we experience an explosion of technology that transforms from moment to moment, we work so hard to keep up.  Unfortunately, in the process, we lose a bit of our humanity as well.

As we tune out the world around us to embrace the one in our phones and tablets, it becomes easier to look past the homeless person on the side of the road.  We find it easier to judge people online, and that judgement can become bullying.  We see tears as cute emojis, and we begin to lose the compassion that made us human.

People struggle with depression, post-traumatic stress Disorder, Bipolar Disorder, Anxiety, and so many other mental illnesses, but do we see them as a person, or a label?  When will we finally realize that we need to come together to remove the stigma around mental illness, and open our hearts to the person who is diagnosed.  In fact, we are more willing to rally behind individuals with cancer than those with mental illness.  Why can’t we just support those who need us, whether they are physically or mentally ill?

It is time to put down the phone, even if it is just for a moment, each day.  Take that time to make a difference.  You can inspire someone who is struggling, listen to someone, smile at others and make eye contact, volunteer, donate time or money, let someone know you care, or any gesture, large or small.  Just one small act of kindness can create a ripple effect.  If you have time to send a text, you have time to make an impact.

 

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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.

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.

The Elephant in the Caregiving Room!

This post is going to be incredibly personal as I discuss something about caregiving that is often left out of the equation.  The fact is, people tend to portray the heroism in caregiving or the toll it takes on caregivers.  Yet, there is a conflict that arises and is never discussed, at least not that I have seen.  We all know caregivers lose a piece of their life, they give a lot of time to care for loved ones, and they lose privacy, but there is something that is lost that goes much deeper than an afternoon out.

My parents have cared for my grandparents for 13 years.  After my grandma passed last year, they continued to care for my grandpa.  Recently, they took my Aunt Mona, who is dying from cancer, in.  They have sacrificed all privacy.  My mom has been a caregiver full-time instead of working, and now that my father is unemployed, he has been a caregiver full-time as well.  They spend their life organizing medications, doctor appointments, wheelchairs, nurse aids, oxygen tanks, bathing, feeding proper foods, and any other aspect that fills the corners of each day.  This is something people tend to associate with caregivers, but unless you are the caregiver, or you truly see what these people do, you cannot possibly understand the effects that go beyond this.

I have lost a huge part of my parents, and they have lost themselves, and their relationship.  I used to be able to call my mom and go to lunch with her when I had a day off and my son was in school.  We could go shopping, have mother daughter time.  I could hang out with them and watch movies.  We could meet for dinners.  They used to be able to go to dinner or a movie as a couple when they wanted.  They could schedule a vacation.  Instead, they have learned to love as partners in caregiving, not partners in the typical, marital sense of the word.  They do not have the same relationship because the caregiving has become their world.  As I approach graduation, I had to worry about the fact that I only have 6 tickets for family, and they do not have anyone to watch grandpa and Aunt Mona.  They do not feel like the extended family will take the vacation time to help.  There are a few siblings that could not because they are not able to financially, but even those who could, would consider this a burden and would most likely not make this work.

The problem is, I feel guilty because I do not want my grandpa or Aunt Mona there.  I know that if they are there, my parents will be distracted.  My grandpa has Alzheimer’s and when he is away from home, he gets anxious.  If he gets anxious, my dad will be worried about getting him home, and my mom will feel like she is rushed to leave.  The whole time will be spent worrying about them, and I want it to be a day that I can get the degrees I worked 6 years for with my parents who should be able to enjoy watching their daughter achieve something.  I feel like I should not feel this way because my parents can’t help it, but then I feel like I should be able to feel angry because my parents should have a more supportive family network.  This makes me angry.  Then, I feel conflicted.  If I feel this way, I can’t imagine how conflicted my parents feel.

When I see my cousin post pictures of her taking her parents on a train ride through the mountains and enjoying a small vacation with them, or pictures of happy, stress free dinners, I get angry.  These people get to live their life, and they do not have any realization that my parents do not get this vacation, and I can’t invite them on a small vacation.  We do not get stress free dinners together, and we do not get to have anything remotely like they do.  Their lives are full of freedom while my parents are restricted by this role of caregiving.

Now, I do not want people to think I devalue caregiving.  If anything, this makes me respect caregivers even more.  What I want to do is make people understand the extensive effects of caregiving,  Relationships suffer, freedom is lost, and feelings become turbulent.  Feelings of duty and expectation mix with anger and guilt.  Caregivers, and their close family members who are actually involved, tend to live with guilt when they feel upset or angry over the abandonment of the rest of the family, and the overwhelming nature of caregiving.  Why should someone who gives of themselves daily because they care for another human being feel like they cannot share their feelings?  Why should they feel as though they need to keep plugging along without days of grief?  Why can they not be allowed to express frustration without feeling guilty?  It is because society expects them to be troopers.  We expect them to give of themselves without a reprieve and to be thankful because they are impacting another life.  Yes, caregivers may be thankful for the time they spend with their loved ones and knowing they are getting the right care, but they are also overwhelmed, exhausted, and they deserve to express their emotions without judgement.

These feelings are normal.  It is a lifestyle change that seriously affects every aspect of a caregiver’s life, and they have the right to be overwhelmed, and they should not have to feel shame or guilt when they feel this way.  It is also normal to feel jealousy, anger, and resentment against the rest of the family as they move on with their lives, leaving the caregivers behind in the haze.  This is what people need to discuss because otherwise, more families become divided, and more caregivers will carry unnecessary guilt.  It also needs to bring light to the inequality in families when it comes to caregiving because so many are left without a family network to rely on, and this breeds feelings of extreme anger and resentment.  I can honestly say that I am still working through this as I deal with anger towards the rest of our family.  I see people who get to live their life, and I desperately want more natural time with my parents.  This is the elephant in the caregiving room.  This is what is no one want to talk about, but it is there, causing tension and pain in caregiver homes everywhere.  This issue needs to be faced head on, and dealt with because caregiving is becoming more prevalent in our society, and the baby boomers are aging.  It is time to make a change instead of avoiding the issue, and the first step is to recognize this problem.

Advocacy Blog Series: Caregivers for the Elderly

This topic is going to become more prevalent as the years pass because while the elderly population is significant now, it is going to become much larger with the baby boomers reaching retirement age.  The care of the elderly has been split from nursing homes, to families.  Ideally, elderly patients would like to remain as independent as they can for as long as they can, but inevitably, the body breaks down, memories begin to falter, and independent living becomes impossible.  This is where decisions need to be made, and it is a truly complex process.  Some patients need more help than the families can or will provide and nursing homes are the only option.  If the family cannot pay, there are government run homes, but the quality of care may be a concern.  If the family can pay, there are plenty of options depending on the level of care.  However, more often, families are choosing to care for their family member.  It is often a child caring for their parent, and it can be a challenge.  This is where advocacy comes in.  Caregivers are the advocate for their “patient,” and with the way health care is set up, it can be incredibly difficult.

One of the problems with health care right now is that it is not built for the patient as a whole.  Most elderly patients have many problems, and they need to see many different doctors.  This needs to be monitored closely by the caregiver because with multiple doctors, there can be something missed, or too many medications prescribed.  It may seem odd for so many doctors to miss something, but if they are looking at one specific organ or system in the body, and not treating the person as a whole, they may treat a symptom of a larger problem.  Often, medications can interact with each other, and if one doctor does not have all of the information from another doctor, they may prescribe medication that could be problematic.  How can a caretaker manage this and provide the care their loved one needs?

Organization is the key.  A book should be kept with copies of doctors names, medications, diagnoses, and other pertinent health information.  As much as technology can help, there should be a paper copy that can be brought to each appointment and shown to each provider.  My mom is a caregiver for her father and sister-in-law.  She keeps records of everything, maintains them, and brings them to each appointment.  The reality is, her memory is shaky at times, and she is under a great deal of stress as a caregiver.  It is a difficult job, why make it more difficult by trying to remember everything.  Keeping thorough notes eliminates the additional stress she would have without the notes.  This also makes it easier if my father needs to take over at an appointment because my mom is ill, or if I need to go to the house to take over so they can get a break.

Caring for the elderly also requires nerves of steel because dealing with the continual problem of insurance can be tiresome and even a battle at times.  Ensuring the patient has everything they need may also require a battle or negotiation with the insurance and providers.  The patient may be violent or angry which is common in Alzheimer patients.  They may get depressed, upset, lose control of their bowels in public, and many other potential problems.  This means the caregiver must be ready to handle any complication, despite the feelings that may stem from them.  It is not an easy job, and the caregiver has to be prepared.  They may have a  patient who does not want to follow medical orders.  They must be their advocate and either enforce care, or enforce freedom.  Advocacy is not always what one pictures.  Sometimes, you have to make a decision you do not like because it is the wish of the patient that matters.  Sometimes you have to assert control if you feel their decisions endanger them.

Caregivers of the elderly are more than advocates, they are friends and companions.  They are the ones comforting the elderly as they lose their memories, suffer pain, and go through loss.  They stand up for them when it comes to their health care and insurance, and perhaps in other situations as well.  The healthcare system in place has not made this job easier, and it is up to the caregiver to navigate a broken system and try to see when miscommunications lie between the various doctors and hospitals treating their patient.  Caregiving can be thankless.  As my mother says, “Sometimes the payment is a smile and laugh that you get at the end of the day.”

Advocacy Blog Series: Parents as Advocates

I think it is crucial to discuss the aspect of advocacy that blends into the role of parenting.  When a child is born, the parent is automatically the advocate unless the child is a ward of the state or another family member.  There is an instant responsibility that goes deeper than basic care and devotion.  Every time that child has a problem, is ill, needs supportive services in school, requires a legal guardian for sports, or anything else, the parent falls into the role and becomes the child’s advocate.  Some parents take to this quite easily, and if they are lucky, they will make it through the 18 years of guardianship without a hiccup.  However, it is likely that something will happen.  The child will probably be hospitalized at some point, they may require counseling for depression or more severe mental illnesses, they may be a victim of bullying or abuse, and they may have a physical illness.  It is almost guaranteed that a parent will face at least one serious issue where they must advocate for their child.

What does this mean?  It means you must be willing to be informed, to question, to learn, research, have sleepless nights, make tough decisions, and do whatever else may be necessary to help your child get the help they need.  The system, whether educational, medical, state, or judicial, should be there to support you and your child as well, but things can go wrong.  Even the people working in the system may make misinformed decisions, stereotypical assumptions, or mistakes.  This is why it is so important for parents to put the extra effort in.  here are a few examples:

When my son struggled with mental health issues that threatened the safety of my family, we had to research his conditions, understand the medications, seek residential care, and fight the doctor who attempted to place him in a group home where he would have ended up in the state system.  It was not easy.  In fact, most of my days were spent researching, making phone calls, or sending emails.  The one truly important lesson I took away from this situation was the need to document everything.  When the doctor was acting unethically, I began to copy very detailed emails about his plans and our concerns to people in the government, at the top of the insurance company, and advocacy agencies.  This had a major impact, all info was documented, and he was fired.  We were able to get my son into a facility that was able to help him.

When my daughter was diagnosed with Hypoplastic Left Heart Syndrome, we were shocked at first.  Thankfully, I had an incredible woman at the hospital who was an advocate for me as I tried to get my daughter on SSI.  It was a nightmare, and I had suffered abuse over the phone from my local SSI representative.  I was not strong enough at this point to fight, but this woman helped me, she fought for me, and was a perfect example of why advocacy is important.  After I grew stronger, and did some research, my life became about doing everything I could to care for my daughter.  My husband and I were proactive, we kept medication logs, medical records, notes, and anything we could to help track her care between surgeries.  This was another example of the need for documentation, but also the realization that outside help from an advocate can be incredibly helpful.

Finally, in the educational arena, we have had to work very closely with my son’s schools to accommodate his disabilities.  He has had an Individualized Education Program (IEP) since he was in kindergarten, and it was very useful.  For a parent, it can be confusing at first, but there are a few things you can do to help.  First, read the school’s handbook, next, research IEPs, and look at specific state regulations.  Pay attention to your child and how he/she learns, responds, calms, or reacts at home.  Take notes on a regular basis about things that help and things that do not.  This is information you can supply in IEP meetings.  The more knowledgeable you are about the school system and what accommodations can be made, the better you can be at advocating for your child.  You also need to be open to recommendations.  If something doesn’t feel right, say no, but listen to reasoning first, and do not be afraid to ask questions.

These are only a few examples, but they truly express the ones that stand out to me as learning experiences.  Every parent will need to step into this role in some way, and some more than others.  Do not fault yourself for mistakes, or feel guilty when you miss something.  There are handbooks everywhere, but none that can truly guide you in your specific situation.  As an advocate, it often feels like the weight of the world is on your shoulders, but if you reach out for others, you may be surprised at who is there, and who has been through similar experiences.  Please feel free to share your experiences.

Advocacy Blog Series: Narrative Medicine

So what is Narrative Medicine, and how can it help in advocacy?  Continuing from yesterday’s post, I want to explore the communication gap between medical professionals and patients or caregivers.  Unfortunately, there are many cases where a patient or caregiver is afraid to speak up or not sure how to speak with a medical professional.  They may feel ignored or mistreated in some way.  This is not always the professionals fault.  In fact, the burden is often carried equally due to miscommunication, lack of knowledge, or because of other issues.

In my experience as a parent with two sick children.  I have had to be a strong advocate for them.  There were many instances where I was ignored because the professional did not feel I knew or understood my child’s condition.  In fact, my daughter’s heart condition required extremely low oxygen saturation between her first and second surgery.  If her oxygen was turned up, it could flood her lungs and cause serious problems.  One nurse came into her hospital room and attempted to turn up her oxygen when she saw how low her sats were, and I had to assert myself and my knowledge.  She did not want to listen and I demanded she go read my daughter’s chart while I turned the oxygen back down.  Needless to say, she did apologize and a note was put on the oxygen control to warn anyone else.

I had some other problems with incorrect medication dosage, but for the most part, the professionals I worked with were incredible.  In fact, at Denver Children’s Hospital where 3/4 of my daughter’s hospitalizations were, we had doctors who listened and stood by us.  My daughter’s cardiologist always remembered her and us, and that personal touch made me feel like he saw her for the little girl she was, not just a patient.  This is not always the case.  Many people have different experiences.  Professionals are pushed harder to get patients in and out as quickly as possible.  Technologies are introduced that make fields a drop down box and tale the personal storytelling out of patient care.  This is where patients begin to feel alienated in a sterile environment and professionals feel analytical instead of connected.  This is why narrative medicine can help.

Columbia University is the pioneer of the narrative Medicine program, and I highly recommend a visit to their site.  The work they do is incredible and it was headed by Rita Charon.  You can watch her YouTube video below.

In my own Narrative Medicine class with Gillian Pidcock, I learned a great deal about the process and how beneficial it can be for various people.  As a person who wishes to be an advocate and a writer who helps parents and caregivers with sick family members, I see how this process can benefit me.  In health advocacy, often stories of trauma are held onto.  We keep these stories in when they need to be born into the world.  If we can help our patients find a way to express what ails them through writing their narrative, we can lessen the heavy load they bear.  If we can help medical professionals let go of the clinical side of their job and connect to stories where they were challenged by a situation or where they felt the humanity in what they do, we can help professionals connect to their patients a little more.  We can also help people let go of the stress these stories contain.  Narrative Medicine can benefit patients, caregivers, family members, professionals, and anyone else who works in this field and more.

As an advocate, think about the ways narrative can spread.  If the medical field can benefit, so can social work, law enforcement, psychology, and so much more.  As humans, we want to open up, share our stories.  It is natural and beneficial to do so.  Please share any comments you may have on this important subject.

Advocacy Blog Series: Advocacy Defined and Explored in Health Care

We hear about advocacy often, but how can we define it?  Advocacy is a part of various careers, and can become a massive part of one’s personal life.  The simple definition is the way in which a person influences others to take up a cause, support a policy, or help with decision making.  Advocates work in social work, politics, law, public relations, policy making, education, medical fields, and many other fields.  Advocates can be the ones standing by children who have been abused as they walk into a courtroom, they may help special needs children get the educational help they need.  Mentally ill individuals rely on advocates as they face treatment, juvenile offenders need advocates as they face the criminal justice system.  The fact is, advocacy is everywhere.  It is a part of society as we seek to help those who need help.  Some advocates are removed from the situation, but help to write the laws that will ultimately protect individuals.  Some are inspired by an experience in their lives that helped them to see what changes were needed.

Why is advocacy so important?  It is important because many systems are broken.  As the world continues to grow, technology advances, and societal expectations change, more individuals begin to see the need for change.  Because everyone is different, one person may prefer the hands on work with individuals who need their help, and others may prefer to lobby and become an activist.

I have seen many systems that need change, and I plan to work in advocacy.  However, I am still trying to determine how I can best make a difference.  I love to write and plan to write a book to help parents with sick children to become advocates for their children, but as I have moved along in life, I have found even more battles that need to be fought.  I have found the medical system to be broken for both physical and mental health.  I have seen my parents as caregivers struggle to get the correct care for our loved ones.  I, as a mother to two special needs children, had to fight the system.  This should not be the case.  Parents and caregivers have enough stress, and the healthcare system  is supposed to make people better, not worse.  The bigger the divide becomes between caregivers, patients, and professionals, the more the care is affected.  Humanity seems to be a thing of the past, and I am finding that I wish to fight for better communication between these two sides.  How can a bridge be built when the funding is supporting a bigger gulf.

This is a topic which is finding its way into more places from blogs, to news, to a whole field at Columbia University called Narrative Medicine.  People do not want healthcare to continue on this path, they want to connect to professionals.  Many professionals find that they do not have the time to care for patients like they thought they would.  If both sides are unhappy, the system is not working, and people need to rise up to initiate change.  Like any great battle, it does not happen quickly, it must be fought from various angles, and this is why more people need to become advocates.  More people need to be strong, and stand up for their beliefs, their loved ones, and themselves.  I would love to hear others comments about this issue.

Advocacy Blog Series Begins Tomorrow!

I want to say thank you to all of my followers!  I have decided to continue the process of writing a series each week.  I have had a great deal of positive feedback, and it allows me to look at various issues even closer or from different angles.  I did the Empowering Women Series this week, but I want to tackle something very near and dear to me this week — Advocacy.  Advocacy is incredibly important in various careers, but also on a personal level.  People advocate for themselves, for family members, for friends, and neighbors.  It is something that fills our lives in ways we do not even realize.  I will write about various aspects of advocacy while also relating personal stories or experience from my own life.  Please join me this week as I journey  into this important topic!

Control and the Caregiving of the Mentally Ill!

I have not spoken about my son on here yet, and it is time that I do.  It can be difficult to speak about the caregiving that goes with caring for a mentally ill child because mental illness has become a dirty term in our society.  While we speak about the needs to pay attention to mental health when someone kills themselves or someone shows signs that were ignored and people die as a result, we never really confront the lack of care.  We do not consider how families struggle with the various perspectives people have about mental health.  My son is mentally ill, and I have spent time wondering who I could talk to because I do not want them to think I am a bad mom or we are a broken family.  Are we broken, sometimes it feels like it, but we manage to piece ourselves back together.

My son has had various diagnoses since the age of 4.  We know for sure he has ADHD as he flaps his arms, has rapid thoughts, and cannot focus.  This is just the the beginning.  He has social issues and has been put in the autism spectrum umbrella.  He has also been labeled bi-polar, but that label has been removed.  He also has oppositional defiance disorder.  The last one is difficult for me as I think it is basically a child refusing to do what they are supposed to do.  He definitely has that, but I do not believe it is a mental illness, I believe it is a choice.

The past two weeks have been a nightmare in our home.  My son was doing well, but his grades continued to drop.  He was grounded from electronics and found ways around parental controls, but he was doing well compared to what we consider to be not well.  We put increased pressure on him by taking away his ereader since he figured out how to get through parental controls to access Facebook and have inappropriate conversations.  We thought we were winning as we took more and more control, but he pushed back…hard.

He has now refused to do any assignments over the past two weeks, he has not participated in classes, and he has earned 8 after-school detentions and an in-school suspension since then.  He has made it clear that this is his choice, and he said if we took him to the therapist, he would not participate and would waste our money.  At this point, he was 3 weeks into the new marking period, and all of his grades except one, was an F.  One was a 60%.  His lowest grade was a 7%.  This was what control led to.  The harder we pushed, the harder he pushed back.  This is when we stopped and gave him control.  We let him know his choices.  He could repeat 10th grade, end up in juvenile detention if he continued down the more defiant path, residential treatment again if he refuses to participate and does not work with his therapist, or he could take responsibility for his actions and turn things around.

Surprisingly, he started to make positive decisions today, and while I am afraid to get my hopes up, it shows that sometimes we need to relinquish control to find the best outcome.  This can be difficult for caregivers because we hold a lot of responsibility.  We are used to doing everything, but when we have to let go, we feel out of control.  I think this is especially true in cases of mental illness because there is so much we have yet to understand when it comes to mental illness and we already feel out of control.  This type of illness affects the whole family, and can be devastating.  It can take over your whole world, make the entire family dysfunctional, and cause a great deal of stress.  I have struggled to handle the barrage of turmoil while still maintaining my college coursework, my job, and my leadership roles.  I managed, but how many caregivers of mentally ill individuals are suffering and afraid to ask for support because they are afraid they will be judged.

It is time we open our hearts and recognize mental illness for what it is, an illness.  We should not make people who suffer through depression, bi-polar, and the many other conditions out there, feel as though they are abnormal.  We should not make families feel like they have to hide their mentally ill relatives or children because that makes it appear as though it is shameful.  We should be having a discussion with one another about how we can help the mentally ill and their families.  We should be trying to understand these individuals because they deserve to be loved and accepted for who they are, not for the image they present to the world.