Advocacy for a Loved One: Part 2

Have you needed to stay at a hospital in the last five years?

Believe it or not, they are not in business to care for sick people. Pretty ironic, huh? I think if Americans were asked what hospitals were for, they would resoundingly answer to take care of people who are ill. So where is the disconnect?

Registered Nurses are completely outnumbered by patients at hospitals. In busy hospitals, their assistance is limited to doing vitals, giving prescriptions, performing routine medical assistance, and emergencies.

The Certified Nursing Assistants (CNA) are assigned the dirtier work, but there isn’t a button for a patient to call a CNA instead of an RN.  I am a fall-risk patient which means an alarm goes off if I use the toilet or sink independently. When I don’t have an advocate to walk out to the nursing station to find assistance, I irritate the RN’s with requests to help me ambulate safely.                                                                                                                                                                                                                         

The Certified Medication Aide (CMA) only visit patients twice a shift. If you need a medication between the shifts, you won’t get it. Unless you have an advocate pushing nurses to call doctors, you will suffer.

As an advocate, you should know what prescriptions the hospital will not administer to your loved one.

Children’s hospitals are super successful due to their superior communication system. The doctors and therapists communicate with each other and parents directly at a team meeting. Then the patient isn’t exposed to more harmful treatments than she/he can tolerate.

Doctors do not develop individual patient plans together for adults with chronic conditions. An advocate helps adult patients remember specifics so that specialists or emergency staff do not accidentally cause harm.

Insurance companies refuse admission to patients when they are in dire need. Of course, it may be that only low-income patients face this problem. When I had excellent insurance, a suburban hospital admitted me for kidney stone surgery in the middle of the night. They gave me morphine for the pain while we waited for a urologist to come to work.

When I need emergency surgery now, my treatment is vastly different. The metropolitan hospital that accepts Medicaid and Medicare won’t admit me or give me pain medication while I wait for a surgeon.  I’ve endured days of pain when they sent me home instead of rushing me into surgery. Before they admitted me, my kidneys started bleeding from multiple stones. When I go to the ER with an advocate, I am not left unattended for hours in the hallway on a gurney.

If all else fails, every hospital has a patient relations department. They work during the daytime. You may have to demand the hospital send a patient relations advocate to resolve more serious care concerns.

From the above, you might think I don’t like nurses or doctors.  The truth is- I know some wonderful nurses, therapists, and doctors. Some have saved my life. Their career intentions are often hijacked by hospital management, insurance companies, and exhaustion.

Before your next hospitalization, you might want to share the highlights of this post and  Family Advocating for Family Part 1.




Freedom of Mind

flag with fireworks

As I imagine my ancestors fighting in the Revolutionary and Civil Wars, I am acutely aware that freedom isn’t free. As an advocate for the uniquely-abled, I could sound ungrateful for my family’s sacrifices. That couldn’t be farther from my truth.

This is an amazing country for persons with disabilities. Though it can be a fight to stay independent.

  • Fight the insurance companies who withhold services I need.
  • Fight hospitals who make incorrect diagnoses or don’t listen to my needs.
  • Fight for my next breath as my disease controls my heart and lungs. 

Maybe I’m not so different from my relatives?

During a recent surgery, my basic freedoms were compromised. My doctor left specific instructions for the post-surgical nurse to re-position and move my arms and legs. I awoke in a horrific situation.

My eyes opened and I overheard the phone call between the nurse and doctor. They debated my admission to the hospital. I couldn’t speak or move anything on my body. The staff wasn’t watching me. They isolated me behind a curtain even though my bed was the only one being used.

What could I do to say, “I’m in pain! I cannot move my body.”

With Multiple Sclerosis, I have learned to let go of control over my surroundings. Fighting the progression of the disease fails to accomplish anything.  Yet, this loss of control completely unnerved me.

I prayed this wasn’t the end. What was I supposed to do?

Let go. Let God.

As my human body fails me piece by piece, my will cannot overcome the will of God. At this moment, I felt God do something to my spirit that impacted my body.

Relinquishment of everything, allowed me to experience freedom of mind. When all options are stripped away, I found the Holy Spirit infusing me with strength beyond myself. God taught me how to access this freedom in the moments I waited to move a finger… then a hand to catch the nurse’s attention.

On earth, there is no true freedom in pursuing my Constitutional rights.

Unless I connect with the Spirit of God, I may not be able to survive in this world of sin and disease.

I face each day with prayer to unite my soul with freedom of mind. Then I can give to others as problems arise.