Spiritual Experiences from the Brain

Margaret Dempsey and Nursing Home Hell

 

Margaret Dempsey found herself in a bad place at a bad time of her life.

She was 82, had undergone several back surgeries as well as two hip operations and one on her right knee. Despite all these surgeries, and perhaps to a degree because of them, she was still in a lot of pain, pretty much all of the time. To make matters worse, her husband had a stroke and was in a nursing home.

Margaret, who could barely take care of herself, certainly was unable to tend to her husband’s needs and so she, somewhat reluctantly, resigned herself to being in the nursing home as well. At least it was the same one as her husband so she could see him every day. But that is where the bright spot ends. Because she had complete control of her mental faculties she could fully appreciate the dismal existence of living there. In fact, she told me that no one at the nursing home believed she had anything wrong with her, and they disliked her because their poor care of her didn’t go unnoticed.

Unfortunately, for most patients and their families, a nursing home is a necessary evil. Patients are generally too ill or weak to go home and families don’t have the facilities or the capabilities of taking care of their loved one in their home. And despite the fact that some nursing homes promote themselves as ‘rehabilitation centers’, it is a thinly veiled guise of their real nature…they are still nursing homes. (Which is kind of ironic, because they often times provide no nursing care whatsoever!)

In fact, it would seem that the lack of ‘nursing care’ the rule rather than the exception.

My wife’s father had Alzheimer’s disease and was confined to a nursing home for the latter part of his life. Were it not for my mother-in-law and my wife, he likely would not have lasted as long as he did. The stories they told me would cause even the meekest person to become irate… ‘But often you would have to bite your lip for fear that some of the nurses or aides would try to teach you a lesson by treating dad, even worse’.

‘They hate the squeaky wheel’, my wife and her mother used to say. Granted there were some good, almost saintly people who worked there; nurses that actually cared and took an interest in the well-being of the residents, making sure they were properly fed and clothed. But it seems, nursing homes attract many health care workers at the tail end of their careers that just got burned out taking care of critically ill patients, or perhaps in some cases were not successful keeping a job within mainstream medicine.

My wife would say, ‘You could always tell when certain nurses were on duty because when you would walk around the facility all the patients were practically comatose in their (wheel) chairs from being over medicated’.

Another time her father wound up with eight long scratch marks on his back from the nurse's aide with incredibly long finger nails which she dug into my father-in law’s skin as she picked him up. It really told a story about a person that was so irritated about having to lift up this poor disabled person from his bed that she could care less if she injured him or not. And she was supposed to be there to take care of him!

Of course this was not an everyday occurrence but what was, was the medication errors. The nurses would frequently dispense the wrong medication to my wife’s dad, almost as often as they would put his clothes on another patient, despite the fact the articles of clothing were clearly marked with his name.

And this was one of the better, more ‘affluent’ nursing homes. I can’t possibly imagine the depravity of care so many thousands of patients receive in poorer and less well equipped facilities. No wonder lawyers can make a living just suing nursing homes.

‘Many of the patients residing in nursing homes are unable to speak up for themselves’, my wife told me, because they have dementia from either advanced age or Alzheimer’s, and ‘unless they have family members that are there to speak for them they will not get the care they deserve’.

And it’s not just the nurses and aides that frequently neglect these patients, the physicians that staff these facilities are guilty as well, either not visiting at all or sending their assistants to tend to medical issues (if any are brought to their attention at all). If they do, it is usually because a family member has intervened on the patient’s behalf.

In fact, Margaret Dempsey told me that because she was unhappy with her physician she wished to switch to another. Finally, after much complaining, the nursing director and social worker gave her the names of several physicians. One of them refused to see her for some unknown reason and the other who said he would take her on as a patient has yet to see her nineteen days later, and counting.

Initially when I reviewed Margaret’s MRI films prior to seeing her I thought she might benefit from additional surgery but that was before I realized she was 82 years of age and had so many other medical problems. And when I sat down with her in my office I realized her biggest worry was that she would not be taken seriously about all the pain she had. I could even sense the extreme level of her anxiety by the way her facial expressions tightened as she talked.

And what distressed her even more was that Margaret understood because she did not have dementia she found herself to be one of those 'squeaky wheels'. Without any doubt, the nurses and the aides at the nursing home resented her for it, and any opportunity that they had to make her life difficult, they did just that.

Margaret Dempsey found herself very lonely indeed. And so all I did was sit down with her, and listen to her tell me about how badly they treated her at the nursing home, speaking up only occasionally and nodding my head in complete agreement, as I only too well understood her condition and situation. And by the end of our time together, helped by an occasional smile, her spirits seemed to be lifted a bit.

As I got up to leave, she asked me if I could write down on the doctors progress notes from the nursing home all of her problems, so they would now believe her. I turned and said, ‘Absolutely’. So, as I handed her the papers with my recitation of her symptoms, all of the operations she had undergone, my interpretation of her MRI scans and my medical conclusion that she had a very good reason to have continued pain, I said to her, ‘Here, you can keep this and show it to them whenever they tell you they don’t know what you are talking about’. She thanked me, took the paper as I sensed a small amount of peace that came across her face.

‘Let brotherly love continue. Do not neglect to show hospitality

to strangers, for thereby some have entertained angels unawares.

Remember those who are in prison, as though in prison with

them; and those who are ill treated, since you are also in the body’

Hebrews 13:1-3

A Malignant Tumor, and Support for the Caregiver

Carol Edwards was 67 years old. When I first met her she appeared socially proper and refined, and she was dressed impeccably. Her husband, Thomas had been diagnosed with a brain tumor a year previously, and had undergone surgery at the Henry Ford Hospital in Detroit, Michigan. The surgeon was able to remove most of the tumor visible on the MRI scan and not surprisingly, Thomas recovered without any neurologic deficits. Unfortunately the diagnosis was that of a glioblastoma multiforme, which is the most malignant form of brain cancers. He received radiation and was started on chemotherapy and because he had done well and his follow up MRI did not show any tumor recurrence, he and Carol decided to come to Florida for the winter.

Shortly after arriving in Dunedin however, he began experiencing some neck pain. His doctor figured that he probably had some arthritis in his neck since he was 69 and suggested he see a chiropractor. Within a few weeks he also began experiencing some numbness and tingling in his arms and legs and began having difficulty walking. His doctor then ordered an MRI scan of his cervical spine and this revealed the presence of a tumor within the center of his spinal cord extending from just below his brainstem to the level of the sixth cervical vertebra. This most certainly represented a rare but not unheard of spread of the glioblastoma from his brain. He was sent immediately to my hospital for neurosurgical evaluation.

After I finished operating for the day I went to the emergency room that evening to evaluate Thomas and it was there I met his wife Carol and their daughter Audrey. I explained the location of this tumor was perhaps too risky for surgery and that most  neurosurgeons in private practice, myself included only rarely see patients with tumors in this location let alone one that had spread from a glioblastoma in the brain. I prescribed a steroid medication to control the swelling in the spinal cord that likely would occur as a result of the tumor.  I then offered to call his neuro-oncologist in Detroit first thing in the morning to inform him of the latest developments in Thomas’ condition and ask what he would recommend, since they were contemplating returning to Michigan for any additional surgery or treatment.

After speaking with the neuro-oncologist and explaining the location of the tumor he merely said palliative radiation would be the only course of action which Thomas could just as easily receive in Dunedin, Florida as he could in Detroit, Michigan. He thanked me and told me he would communicate that to Carol by email right away.

I stopped by Thomas’ room that evening and Carol told me they had decided to remain in Florida for the radiation treatment. I assumed that Thomas would be discharged the following day to carry out the radiation as an outpatient, so I was surprised to see he was still in the hospital two days later. I learned that the radiation oncologist was reluctant to begin radiation without a biopsy and so was arranging to have him seen by another neurosurgeon at the university teaching hospital in Tampa for the biopsy.

Two days later I printed up my patient rounding list and was surprised once again to see that Thomas was still in the hospital. I figured a course of treatment was in place and my assistance was no longer needed so I deleted his name of my list. I went about my rounds seeing my post-op patients and then proceeded to leave the hospital. As I was getting ready to walk out the door, I heard a voice in my head saying, “go back and see him”. I thought to myself, “why?” “Perhaps” I thought, “no one would do the biopsy so if it needed to be done I certainly could do it”. So I turned around and went back to the hospital ward on the second floor.

I arrived at Thomas’ room to see Carol sitting by his bed. She appeared a bit flustered and was hurriedly straightening out folder full of papers that undoubtedly she accumulated during this recent hospitalization. Thomas was sound asleep as he had been most of the other times I had stopped by. When she saw me, she relaxed. I asked her what was happening and she told me the doctors had performed a spinal tap and because cancer cells were identified, the radiation oncologist decided a biopsy would not be necessary and that Thomas had received his first chemotherapy infusion that day and would begin his radiation tomorrow.

I said, “OK, I just wanted to stop by and check in, to make sure everything was progressing, as far as Thomas’ care”. I merely expected her to say, “oh yes, thank you”, but instead she reached out for my hand, with tears in her eyes and said, “thank you so much for stopping by”. Taking care of a loved one who is terminally ill is such an enormous task and can be completely draining emotionally even for a normally strong-willed individual, such as Carol. It is at times like these that caregivers need as much care and support as the patients they look after.

As I left Thomas’ room and walked down the hall on Hospital 2, I realized how important those few minutes that I spent with Carol were. And once again I became convinced that voice inside my head was one of my ‘angels’ keeping me on the path that God put me on.