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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 Laws restricted healthcare, litigation was overabundant, and the humanity has been replaced by a sterile environment which prioritizes other concerns as higher order concerns over the patient.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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It is Not About Pleasing the Patient!

Caregiving.  Giving is a part of the word, and it can be easily assumed that a caregiver must also please the person they care for.  Isn’t that part of the job?  As a caregiver, you want to make the person or people you care for happy and make them feel loved.  In many ways, caregivers worry less about themselves, and focus their energy on their patient.  They dedicate themselves to their well-being, and isn’t pleasing them a part of that?  Well, not always.

To be an effective caregiver, you also have to understand there are boundaries and pleasing the patient isn’t always right.  Sometimes, they want something they shouldn’t have and it could affect their health.  This is where it can get tricky.  Someone with cancer may want a cigarette or a diabetic patient may want candy.  You can appease them and risk their health, or assert control and protect them.  However, what if they are terminal?  Do you relinquish control a little knowing they want some things before they die?  This is a decision you have to make, and you can discuss with the patient and the doctors.

What happens when the requests mean you lose more time needed for yourself?  What if it interferes with your appointments, and your needs?  Again, this is something you must weigh.  You have to understand that if the request is not a necessity or a priority, you have to be okay with yourself saying no.  You have to take care of other priorities, including yourself, and this may mean asserting your needs.

Caregiving is not easy, and there is give and take that can be even more difficult than the average relationship.  It is hard to say no to someone who is in your care, especially when they are extremely ill or terminal, but you also have to consider other factors to make the right decision.  Realize that you matter as well, and caregiving does not always mean you must please the patient.

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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.

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Journey Into the Life of a Caregiver!

Caregivers are everywhere.  Parents are essentially caregivers, nurses and doctors are caregivers, teachers and day care workers are caregivers.  However, the caregivers I will be discussing are those who dedicate their lives to the care of others.  Nurses, doctors, teachers, and day care workers get to go home, but caregivers who provide care in their homes to a loved one work non-stop.  There are many of these caregivers, and there are those who stand on the outside looking in once in a while.

If you are not a caregiver like this and you have never been a caregiver like this, it is impossible for you to understand the demands placed on the caregiver.  Perhaps you have a sibling who takes care of your elderly parents and you live in another state.  You may see them on small vacations, but you do not know the true weight that is pressed on a caregiver after weeks, months, and years of caregiving.  You do not know the way it feels to no longer have your home to yourself and to lose your privacy.  You have no concept of what it is like to no longer have freedom because each moment of your life is dictated by the person you care for and their needs.

This is why it is crucial to understand it.  You need to walk in their shoes.  Every caregiving situation is different and they can change and become more difficult as the person ages or becomes more sick.  If you are not a caretaker, but you know one or you are a family member of one who should be more involved, become involved.  Stop taking advantage of the family member who has dedicated their lives, and take some responsibility too.  Incorporate ways to help, provide relief, and do more than move on with your life knowing your loved one is lacking the support they need.

The caregiver needs your support and the person being cared for does too.  If they are abandoned by everyone else, they must feel as though they are a burden and the person caring for them is the only one who cared enough.  You need to recognize that each time you call for 10 minutes to pretend you actually care or to remove your guilt is seen for what it is.  Not everyone is in a situation where they can caregive, but my parents were well off for a while and the excuse everyone else in the family used for my parents needing to take on the role was because they were financially able to.  Now my parents are in a situation where they make less than many of the siblings, but when they tried to get help, war ensued and nursing homes were the first thing everyone else brought up.  This is why they gave up on asking for help, because they knew what the outcome would be and they cared too much to let the human beings they care for to be seen as a burden.  They have the hearts that recognize the need for compassion and humanity, but unfortunately, not everyone else does.

Journey into the life of a caregiver to support them, and consider the humanity in caring, not the work or the burdens.  Caregiving is difficult and it should be shared because respite is needed.  To those caregivers who place your loves ones at the top of your priorities and provide loving care each day, thank you for being a part of the small percent who still embrace others with love and humanity.  Thank you for being the beautiful person you are!

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The Elephant in the Caregiving Room Introduction!

I have another blog on WordPress, but I realized that I was writing about caregiving and leadership when those two topics need to be separated for me to truly address them the way I want to.  One of my caregiving posts was called The Elephant in the Caregiving Room.  It was the breakthrough post that allowed me to voice my opinion, based on experience, about all of the things people do not want to discuss as caregivers.  The phrase became quite popular with my friends and family as well as a few people who responded to my blog, and I realized this is what I need to write about because it is important.  Caregivers hold back so much, and they should have a way to express themselves.  I now plan to work on a book for this subject, but I will be tackling aspects of this topic on this blog as well.  Here is the post that I wrote that started it all:

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.