With permission, I am posting the following experience a friend recently shared with me and others. The story speaks for itself. Please know that the names of my friend, her mother, and the doctor have all been changed.
If you are like me, by the end of this reading you will be shaking your head and letting out a big, exasperating sigh.
Again, if you are like me, that sigh is because you have your own stories of attempting to help your loved ones or yourself through a broken health care system and you feel empathy with my friend and her elderly mother.
What is the solution to this broken system? Write our politicians?
Again, if you are like me, you take the time to write your politicians only to receive back form letters that barely address the issues you addressed in your own letter.
What is the solution?
Dear Friends and Fellow Bloggers,
As I previously mentioned my mother was diagnosed with a brain disorder known as Normal Pressure Hydrocephalus in 2005. As a result, my mother’s life has drastically changed and I have become her primary caregiver. Until now, I have refrained from writing a great deal about this out of respect for my mother’s privacy. However, due to recent events in navigating the health care system I can no longer remain quiet. I have been sharing many of the details of this recent episode on my Facebook page. Sadly as disturbing as my experiences have been, it seems that so many others have equally horrific stories to share.
The following link provides a great overview on the topic of NPH
As this article states:
“The dementia symptoms of NPH can be similar to those of Alzheimer disease. The walking problems are similar to those of Parkinson disease. Experts believe that many cases of NPH are misdiagnosed as one of these diseases. The good news is that, unlike Alzheimer disease and Parkinson disease, NPH can be reversed in many people with appropriate treatment. But first it must be correctly diagnosed.”
In recent years the medical community has recognized just how frequently persons suffering from NPH have been misdiagnosed. In fact, it was the topic of a recent episode of Grey’s Anatomy
To provide a little more background, the follow is an excerpt from an email that I sent to several friends last June:
So if you have elderly loved ones here is what you should know about NPH and why.
If your elderly loved one suddenly starts experiencing loss of short-term memory, a lack of mobility or a lack of bladder control, please do not just chalk it up to just old age or senility. These are the three identifying symptoms of NPH and can be determined by having a MRI to see if fluid is building on the brain. If NPH is diagnosed early, a brain shunt can be inserted into the brain which will drain the fluid from the brain into the body where it can easily be absorbed. In many cases, after the insertion of the brain shunt the patient’s symptoms completely vanish.
Sadly, many elderly people try to hide, or be in denial about, their symptoms and allow them to progress. Unless you live with the elderly person, you may be unaware that they are frequently wetting the bed or unable to walk through their home without holding on to furniture or other props. Equally, sad is the fact that many younger people just assume that memory loss or mobility problems are just natural signs of aging. This is a false and very dangerous assumption. Also, since the short-term memory is affected more than long-term memory, a person suffering from NPH may be able to carry on a lengthy conversation about past events without giving any hint of any memory problem.
It is not totally clear what causes NPH but it is now known that many elderly people are experiencing this condition. In my Mom’s case, it is believed that her condition was brought on after a fall onto the concrete while trying to climb the outdoor steps of a relative’s home. Unfortunately, Mom did not receive medical attention immediately after the fall and also
refused to seek treatment once I learned about the accident the next day. Once Mom’s condition was diagnosed she had concerns about the risks involved in the corrective surgery. So given her asthma and respecting her wishes, I was not insistent. This is a decision that I will have to live with. Hopefully, by sharing this experience with you I can spare you from one day having to make a similar decision.
For more information about NPH
As I have shared with a few of you, once Mom’s condition was diagnosed and she opted to hold off on surgery, I decided to place my tech career on temporary hold. In spite of the fact that I was working from home, it was growing increasingly difficult to meet my employer’s productivity demands as well as my domestic ones. So, after much prayer and fasting, in order to preserve my health and my sanity 😀 , provide my mother with care and dignity, and in fairness to Cigna, I left my last position. Being a human being, I second guess this decision everyday but at the end of each day, still have no regrets. But in case anyone doubts it, learning to live on 10% of what you once earned this has required major financial readjustments and will make you cry sometime. Many people will treat and view you differently.
The following is an email that I sent to my Mom’s primary care physician this morning. It is a perfect example of how persons with NPH, seniors and their caregivers are treated by the US health care system. As it states, I will be contacting the hospital tomorrow (Monday) morning to request her test results and the respective film.
Dear Dr. Smith,
I am writing now to request copies of my mother’s medical records as well as copies of her recent tests.
As I expressed several weeks ago, I had serious concerns about the quality of care that my mother would receive at Chestnut Hill Hospital. Unfortunately, her recent stay has confirmed my worst fears.
I took my mother to the Chestnut Hill Hospital Emergency Room on Tuesday, February 16, 2010 and advised them that she was experiencing a drastic decline in mobility, an unknown mass in her abdomen, and pain in her right ankle, knee and wrist. I advised them that we were aware that she suffers from NPH but her condition appears to have changed. After 11 hours in the ER it appears that the intake intern/resident failed to note anything on her chart about the abdominal mass or my concerns that mother may have sustained stress fractures during her last fall. Apparently, it was not until I brought the non-NPH issues to the attention of the admitting physician on Thursday that he ordered X-Rays and a MRI of the abdomen.
Since the hospital was well aware that my mother’s mental acuity has been affected by the NPH, I thought certain that they would contact me on Friday morning with her tests results. Unfortunately, not only did the hospital fail to contact me with my mother’s test results, a doctor making his rounds on Friday morning told my mother (not me) that she was being released that day.
My mother called me at home at 2pm on Friday and informed me that she was being released. After confirming this with the nurses’ station, I contacted the Chestnut Hill Hospital Social Services office to have my mother taken out of their establishment asap.
My mother’s discharge papers simply read:
Discharge Diagnosis: Normal Pressure Hydrocephalus
Follow up with your office in one week
Activity: as tolerated:
Discharge to: Home
There is no mention of any other condition.
Yet, when the visiting nurse came to our home yesterday, she had a copy of Mom’s abdominal MRI which clearly stated that Mom has a hernia.
I will be requesting a copy of all of Mom’s test results and related film from Chestnut Hill Hospital. I will also be filing a formal complaint and possibly pursuing other actions against the hospital.
Cindy B. Doeish
Daughter & Caregiver for Jane C. Doeish