Letter to the Nursing Home

By: Loolwa Khazzoom, Founder, Dancing with Pain

February 24th, 2009 • Patient AdvocacyPrint Print

Here’s the letter I sent to my mom’s nursing home today. I have changed all names into initials.

When my mom was transferred to your facility from the hospital, she began improving rapidly – in terms of her cognitive abilities, speech, physical movement, and general spirit. I was relieved and grateful for the excellent work the therapists were doing with her.

Side by side with these improvements, about one week after my mom arrived, she developed a persistent cough, as well as severe laryngitis. My mother told me that in response, the nurses either gave her an asthma treatment or instructed her to drink more water. These responses did not seem logical, and I was concerned that arrangements were not being made for her to see a doctor.

I made several requests that my mother see an ENT doctor. I was told that patients were only seen by doctors once a month by a general practitioner (which did not seem reasonable when a patient displayed signs of illness), and that a special request needed to be made for a patient to see a specialist. I persisted in asking for my mother to see an ENT doctor. “V” informed me that she left several messages but did not hear back.

Meanwhile, my mother’s laryngitis improved, so I thought she was on the mend. As I understand it, however, she continued to request to see a doctor, with no response.

On Thursday, February 5, I noticed a marked difference in my mother’s cognitive abilities. While her personality had returned previously, and while she had full cognitive abilities before, she suddenly backslid. She assured me that she simply hadn’t been getting enough sleep. But when she was in the same or worse condition on Saturday, February 7, I flew up to see for myself what was going on and to get my mother the necessary medical attention.

On Monday February 9, I spoke extensively with “A,” who was both friendly and helpful – explaining to me how the system works at your facility, answering all my questions, and giving me the names of everyone working on my mother’s team. He said that a request had been made for my mother to be seen by a neurologist and an orthopedist, but those requests had been rejected, and that a new request was being made for her to be seen by specialists at the hospital.

I suggested that instead of submitting one request at a time, which would delay my mother’s medical treatment by weeks, it would be most efficient to submit several requests simultaneously and get all the answers back right away. I also persisted in exploring alternatives – whether I could take my mother to see a private doctor, or whether there were any other possibilities. After speaking with “A,” I continued the conversation with you. I don’t remember who informed me of the possibility of sending my mother to the emergency room, but as soon as that option was mentioned, I asked that we pursue it.

As you know, sending my mother to the emergency room ultimately saved her life, as it was revealed that she had developed pneumonia. I am grateful to you for getting my mother immediate medical attention that day.

Side by side with that gratitude, I feel alarmed that this illness was allowed to develop, when it could have been prevented by a timely medical examination – which both my mother and I had been requesting for over a two-week period. By the time my mother was taken to the emergency room, it had been nearly a month since a doctor had seen her.

My mother suffered terribly in the emergency room. Not only did she have a chest tube and several IVs inserted, which caused her pain, but in response she received pain medications that caused her to have an extended psychotic episode, where she believed that everyone was trying to kill her. As an upshot, she refused to eat, take medications, or receive treatments, because she was convinced that anything she was offered was going to make her die.

Her illness also took a toll on me physically, emotionally, and financially. Both my mother’s and my suffering could have been prevented. I raise this matter because I continue to be concerned about the responsiveness to my mother’s condition. As you know, my mother has not been well since returning from the hospital. Yesterday she was vomiting and having diarrhea and, on top of it, not drinking water. In addition, she developed laryngitis again.

 I spoke with “E,” my mom’s nurse, and asked what they were doing for treatment. I was told they were “trying to make her drink water.”  I pointed out that my mother couldn’t drink water because she was nauseous and vomiting.

I asked that my mother receive a tablet to treat dehydration. “E” said she would need the doctor’s authorization for such a pill. I asked her to get it. She called back and said she got my mother medication for the diarrhea and vomiting. I was under the impression she also had arranged for an IV of liquid, but three hours later, found out that was not the case. Fortunately, by then, my mother had begun drinking water and did not need the IV.

“E” was responsive to my requests, which I appreciate. Still, I feel alarmed that I am the one who had to suggest taking these steps, then follow up to make sure they were done. I cannot continue to be in a position where I have to micro-manage my mother’s health care, in order to know she is receiving proper medical attention.

At this time, my mother needs the following:

  1. blood work and any other necessary tests done to see why she is so sick
  2. follow-up X-ray of her chest, to monitor the pneumonia
  3. ENT examination of her vocal chords and ears (her hearing has been shot since contracting pneumonia)

In addition, she needs a neurological exam to monitor her progress since the head trauma, and she needs an orthopedic exam to determine whether she can put weight on her left leg.( I understand that these matters already are being taken care of.)

Again, I appreciate the many ways that your facility has supported my mother’s recovery. I look forward to working with you on getting my mother the medical attention she needs at this time. Please contact me when you have read through this letter, to discuss moving ahead.

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