At 83, life was great for my mother. She was still teaching piano, usually driving to the houses of her students. She had been teaching piano since she was 14 years old and studying with Heinrich Gebhard, who was also the teacher of famed composer and conductor Leonard Bernstein. In fact, she had played with orchestra before Bernstein and at one time he was jealous of her.
She had just written her first book, "My Friend Lenny," about growing up with Bernstein and her life in music. She wrote about playing violin duets as a child with Mike Wallace of 60 Minutes fame, and how she hired a young Paul Simon in the 50's, then a Queens College student, who made demonstration records with her for $10 each! They even sang duets.
She was the head of the program committee for her Piano Teacher's Association. Several years after my father died in 1986 she had met a wonderful man, Ray Sandiford, and they had been together for 10 years. Ray edited and typeset her whole book, scanning more than 150 pictures. My mother even said that the previous 10 years had been the best years of her life Then in one moment all that changed.
She was at the local shopping mall, and had just bought a couple of loaves of bread. She started to walk back to her car, watching for traffic as she crossed the roadway in front of the mall. In front of her was a water-covered pothole. She tripped and fell on the pothole, and broke her hip. This was witnessed by people inside the adjacent stores. They ran out to help her, a crowd formed around her. People put blanketson her; she was not able to get up. One of the people in the crowd was the parent of one of her piano students. That woman knew where we lived and rushed to get me. Meanwhile, someone had called 911 and an ambulance was on the way. Somehow, my mother had the presence of mind to have someone bring her pocketbook to her car and the two loaves of bread! When I arrived, they had just put her on the stretcher and were putting her into the ambulance. I went into the ambulance and discussed with her which hospital they ought to take her to. They gave us two choices and we picked the larger one.
In the hospital, they took x-rays and showed me a crack just underneath the ball on the femur. They were concerned that because of where the crack was, that she might need a hip replacement. If you break off that ball, it cuts off the circulation and what happens is dependent upon how much displacement there is. I am certainly no x-ray technician. I could see a little line. I had to take their word for it that that was the break.
After further analysis, they determined that there did not seem to be any displacement, and they thought that the surgery that she would need would involve putting 3 screws into the bone to stabilize it. They said the alternative was to put her in traction and have her in bed for 8 weeks.
So she was admitted to the hospital and the plan was to have surgery the next morning. The surgeon was to be a Dr. Mustasavi. They told me that recovery varied, but they thought she might be out of the surgery, recovery and back to her room by around 11 o'clock. When she was still in the emergency room, my mother said to me, "You know when old people break their hips, they often die. So if that happens, goodbye. It's been good!"
I visited my mother the next day in recovery. Even in that groggy state, she was aware enough to ask me if they had the screws put in, or had a hip replacement. I told her she had the screws.
It was several more hours before the anesthetic worked its way out and she could feel her legs. They had given her a spinal, but I think they gave her some other drugs too. They gave her a little morphine for the pain that was expected. All of this seems incidental now, but in the end they turned out to be rather crucial.
Even after my mother came back from recovery she seemed very, very groggy, and only spoke in a low monotone. When she first came into the emergency room, one of the tests they gave her was for gas levels. They were looking for the oxygen level in her blood, and they said it was very low. They started giving her oxygen, and continued giving her oxygen from that point on. Her level had been 85, and it needs to be well into the 90's to be adequate.
Her recovery was very slow. Sometime into the second day, we began to see some alarming signs. She began to become disoriented; she wasn't sure where she was. One night when I came to visit her she could only make unintelligible babbling sounds; I wasn't sure if she was awake or asleep. In the morning she seemed to be better, so it seemed to be a syndrome they call sun downing where you have more energy and consciousness in the morning, and you lose it as the day goes on. I eventually discovered many names for this phenomenon. It comes under the general heading of delirium.
I talked to my cousin who came to visit at one point and saw her in this state. She said she had seen her father in a similar situation a year ago when he was in the hospital. He is 2 or 3 years older than my mother and his late wife was my mother's sister. She said she brought him home as soon as she could to get him out of the hospital environment with nurses at home. She said she would be willing to pay for nurses to come to our house.
It took over a week, but she started to come out of the delirium to some extent, although towards the end she was clearly hallucinating. She would talk to us, but then she would see bugs on the floor and things in the air. One explanation for this is that it just takes a while for the various drugs and antibiotics that they give to older people to metabolize out of their system. It takes much longer with older people.
After 8 days we took her home. We hired nurses from a local agency to be there 24 hours a day. She seemed to be happy to go home. She was still on the oxygen, and they had portable oxygen units for her all the time, and they brought oxygen to the house for to use at the house. She was not really walking very well at all. With a walker and extra help she could get to the bathroom and back, but it was a totally exhausting ordeal for her.
Once she was home she seemed more lucid, but it became harder and harder for her to walk. We brought her back on a Saturday and Sunday night she had an "accident" and could not get to the bathroom in time. I was awakened in the middle of the night by the nurse. We had to run out to the store to get all sorts of cleaning implements, of which we really did not have enough. I don't think my mother got much sleep. I know I didn't.
Things went downhill from there. We thought we had seen the worst of it when we brought her home, but the ordeal was just beginning. She basically stopped eating or drinking, and there was not much we could do to make her eat or drink. She was communicating less and less. I called the doctor in charge of the case. She said I had no choice but to bring her back to the hospital, otherwise she would become totally dehydrated. She said I had to call the ambulance, 911, to come down and pick her up. She was able to mutter, ":I don't want to go back to the hospital." That was the last intelligible thing she was able to say for quite a while.
The nurse who was at the house came with me to the hospital. It took 7 hours to admit her. They did a whole battery of tests. By the time she was in her room, she could not even speak. I was absolutely devastated and exhausted.
This is a position I think that probably many people have been in who have to deal with elderly parents. You know that the hospital is not the best place in which to get healthy, but you don't feel there is any other choice. You feel totally trapped, and that's how I felt. But I decided that I was going to be very vigilant, and it is probably that vigilance that saved her life. I am sorry to say this, but for people who might be in a similar situation, if you can't either be there yourself or have a combination of relatives and nurses there who stay right on top of the medical situation, I think there is a very good chance your parent won't walk out of there alive.
On our second trip to the emergency room, it was clear that the hospital was seriously under-staffed. The intern who was supposedly assigned to her was called off to some other emergency and did not reappear for a long time. Eventually they started sending her for a variety of tests, blood tests, urine tests, a CAT scan of her brain. The tentative result of those tests was that there was no evidence she had a stroke. Most of the tests they administered during the next nightmarish fortnight came out negative, indicating what she did not have. What they never actually definitely discovered was what did cause the delirium.
What is also clear is that as a result of these tests and the guesses they had about what might be the cause of the problem, some dire disabilities were inflicted on her. For example, at one point they thought there was a possibility she had spinal meningitis, and that this could have been caused by some kind of infection from the spinal she had as an anesthetic for her surgery. Somewhere along the line they started giving her Acyclovere, an anti-viral antibiotic in case she might have spinal meningitis, before they knew the results. Then, some time later, it occurred to them that even though they had tested for spinal meningitis and it came out negative, they had not tested for encephalitis (swelling of the brain), and they wanted to do a second spinal tap.
Here is another example: They thought she was trying to climb out of the bed at some point, so they gave her Haldol. Haldol was a powerful anti-psychotic drug they prescribed to calm patients in the hospital. It is also known to have psychotropic side effects. When she sank very deep into the deliria, they then gave orders that under no circumstances was she to be given any more Haldol, and they assigned aides to watch her 24 hours a day. I found out that it was crucial for people with deliria that friends and relatives keep visiting them and helping to bring them back to reality. In all I visited the hospital and rehabilitation center over a hundred times. Her friend Ray, also 83, visited my mother every other day during the whole time she was hospitalized, and my sister, although she was a teacher living over an hour away came several times a week. Dozens of people visited, and even more called her on the phone. Sometimes she could speak to them. Sometimes she couldn't.
Meanwhile, as a result of the administration of the Acyclovere (antiviral) drug her kidneys stopped functioning! Nobody at the hospital noticed this. Our private nurse, who was technically not even considered to be a nurse in the hospital but simply a "companion," noticed that my mother was not producing any liquid waste through the catheter into the foley in which the urine is deposited. She kept track of what she fed her and noticed that what was gong in was not coming out.
She pointed this out to the nurses who checked and confirmed that this was so. Because they had not been keeping any records of what she was taking in, they had rely on the notes from our "companion" to confirm the fact that her kidneys had indeed stopped functioning. They guessed that this was caused by the Acyclovere and they stopped administering it to her. Over a period of days, the kidney began to restore its function.
Through most of this period of time, my mother was in a state of acute delirium. For the first couple of days on her readmission to the hospital, she really could not speak at all. They had put in an intravenous feeding tube in order to re-hydrate her and give her some nutrition.
Sometime in the middle of the second night back in the hospital, she managed to pull out the feeding tube, which had been fed through her nose and down into her stomach, and pull out the IV. She then pulled out the IV several more times during this period of time, despite the fact that they were watching her fairly closely. Rather then struggling to replace the feeding tube, we decided to see if we could get her to eat and drink more. This seemed to help a little bit, but she could not eat or drink unless she was spoon fed by our nurses. I cannot even begin to imagine how that works with patients who do not have private nurses as we did, to patiently feed them a teaspoonful at a time sometimes over hours. During one of those dark nights, when my mother could barely speak, she said over and over, "I'm dying, I'm dying." And I think she was.
I was almost in a state of despair, but I began to be in rather constant consultation with my naturopath, Robert Lefkowitz. He suggested certain things such as bringing lemon juice to her to replenish the electrolytes. He said the body might be putting so much energy into healing other things that not too much was going to the brain function at that point. He was also worried about the possibility of spinal meningitis, but suspected that it was more the process of metabolizing the various medications she had been given.
At some point, the hospital gave her a CAT scan of her lungs. As a result of this, they said she had very serious scarring of her lungs, and that she had something they call Idiopathic Interstitial Long Disease. (Idiopathic means that they do not know the cause of it). They said the scarring was such that she would have to be on oxygen for the rest of her life, and that was the only way her life could be extended. They also gave her an ultrasound examination of her organs. They were checking to see if there were any abnormalities and they said she had a small amount of fluid in her lungs.
Not long after that my naturopath told me about an "aeronizer" which creates a high degree of charged oxygen in the air. It is just a small square box that buzzes. The smell in the room is like what you smell in the air after a thunderstorm, an ozone smell. One of the things this does is it takes all of the other smells out of the air, and it also tends to create an antiseptic environment in the room. When you have it on high, there will sometimes be some coughing at first because it clears out the lungs of the people in the room. First I brought it in and had it on just when I was in the room. Then I tried to leave it on and told the nurses to guard it, since the hospital might not like it being there. Sure enough, one day I came in and it was not even in the room, they were trying to throw it out. I reclaimed it and started using it just when I was in the room. Eventually I was able to get it inspected by the engineers in the hospital, and they approved it to use, at least electrically.
Very shortly after we had the aeronizer in the room, my mother continuously tried to take the oxygen tube out of her nose. It was really bothering her, she did not like it. Also, I had a theory that the artificial oxygen was one of the causes of the delirium, because it was almost the only constant through the whole time that she was hospitalized and home.
Up until this time they kept on checking her with a machine that measured the oxygen in her blood. It was usually down to 85 or 87 when she had it off, and when she had the oxygen in her nose it was up to 91 or 92, which is in the low acceptable range. One day, one of the nurses we had there allowed my mother to take the oxygen out and leave it out all day, with the aeronizer running strongly. By the end of the day she seemed to come out of the delirium. Not only that, but when they checked her oxygen level, they found it was now about 95 or 96, right in the middle of the normal range, even higher then the nurse's level! It stayed there indefinitely. She never used the oxygen tube again.
Another funny thing: no doctor ever mentioned to me again the interstitial idiopathic lung disease, and how it mysteriously went away.
After several days in the hospital the second time, my mother began to speak again in a very low monotone. She generally seemed to know who I was, although at one point she asked me if I could help her find her mother, and she talked about her mother to the nurses. At one point it was clear that she was having intense hallucinations. She was seeing things that were scaring her and she was screaming. It had something to do with automobile accidents, fire. She asked how we could turn it off. I turned off the television set, and then she pointed to a point on the ceiling and asked, "How do you turn that off?" Then she would see something else that would cause her to scream. She would always be pointing to different things around the room that we could not see.
One night I went up there very late and stayed for a few hours until about 12:30, trying to get her to calm down. But I found out the next day that she was up all night, screaming and fighting with the nurses and seeing hallucinations. When she came out of the deliria she could still remember these experiences, and they seemed very real to her. Even after she was out of the hospital, she would occasionally ask me a question like, "Did we have an earthquake?" One of the intense living dreams that she had was that someone had taken the money and checks out of her pocketbook. Another one was that I had applied to some sort of job and had been unfairly turned down for it; this one she really thought had happened.
But in another discussion, she indicated that she had changed her attitude somewhat about the idea of an afterlife or the possibility of communicating with people who had died. She felt that in some important way that her mother may have been in communication with her and helped her get through this process.
After almost 2 weeks I felt that my mother had gotten very little good sleep at the hospital. I talked to my chiropractor, who practices what is known as Network Chiropractic. It is not only regular chiropractic, but also energy work. He had seen my mother a few times and I had been going for a long time. It had a very positive effect on some of the physical problems that I had several years ago. In fact, I really don't consider that I have a back problem any more, among other things. He has an office in Brooklyn as well as on Long Island.
He stopped by the hospital to see my mother on the way back from the Brooklyn office. He got there at about 10 o'clock at night and came into the room. I do not know if my mother recognized him. He worked on her for a while. Suddenly he said he could not believe what had happened. He was able to release some tension that he thought may have been there for decades. There was a complete relaxation in the spinal cord up to the neck. Almost immediately after that my mother was able to fall asleep, a deep, restful sleep. For the next week, she slept most of the time, peacefully. When she was awake she was very tired, but quite rational and able to have short intelligent conversations with people on the phone.
One day she had a tremendous thirst for orange juice, she probably drank gallons of it. They stopped giving her the IV's. Finally we all decided that she was well enough to go over to the rehabilitation center. Through this process, as she became more aware and rational again, it was interesting to see her go through several different states of consciousness. Finally they transported her in an ambulance from the hospital across to the other side of the parking lot to the rehab center. She said she does not remember this at all, and in fact it almost seems to her that the entire time in the hospital was only a few days instead of five weeks.
The sleepiness continued well into the time in the rehab center. They were giving her a drug called Atenylol for high blood pressure. This drug had been prescribed for her before she broke her hip, and I had noticed that it made her quite tired. She had also experienced what can be called optical migraines, where every few days for about 10 minutes she would see a spinning point of light that would get bigger and then disappear. I felt that her getting these coincided with taking the Atenylol, and since her blood pressure seemed relatively good it seemed that this drug was unnecessary.
When I monitored her blood pressure in the rehab center I noticed that it was actually getting abnormally low, as low as 106/60, so I suggested to the doctor that they cut the dose I half, and they agreed to that. Her blood pressure still stayed low, so I suggested that they take her of it completely, which they did. Her blood pressure has stayed low, around 120/74. Many people wish they could have such a nice blood pressure! The optical migraines no longer occur, and her energy has returned.
Before she broke her hip the doctor who was supervising her resisted taking her off the Atenylol, saying "It is keeping you alive." In a follow-up visit after coming out of the hospital when he saw that her blood pressure was good, he had no comment.
As my mother was ready to leave the rehab center, I was working away trying to clean the house and get it ready for her return. The tendency she has to never throw anything away has stood her in good stead in helping her write her memoir, My Friend Lenny, but it created a number of problems as I had to decide which of the many items she had bought at yard sales and tag sales should be thrown away or donated to charity. Of course, while cleaning the house I was careful to make sure that nothing of any historical value would be thrown out.
After returning home, her recovery was astonishingly fast. No sooner would we get a piece of equipment that they thought she needed, then she was done with it. She never did use the commode or the wheelchair: she only used the walker for a few days and then started using the cane. She no longer uses a cane. She was strongly motivated by several factors: One was that she wanted to develop enough independence that the nurses who continued to serve her in the house could go home. Also, she wanted to get strong enough so that she could climb the stairs to the second floor room that she ordinarily used when her friend Ray visited.
I have only touched on some of the more dramatic sequences in the hospital, and the various diagnoses and recoveries, but at other times, they have had a diagnosis or explored some of the following:
Depression, where they were thinking of giving her anti-depressant drugs
Psychosis, in which they were thinking about giving her anti-psychotics
Heart irregularities. In fact they didn't give her anti-psychotic drugs because they were waiting for her to recover from what they diagnosed as a heart irregularity
Low platelets
A urinary tract infection, which they said that they found her first time in and which they apparently had cured but the treated her again. They theorized that maybe the urinary tract infection had infected her brain
Not long after she came home, the visiting nurse was scheduled to come see her. She said that she really wanted to meet this woman whose medical record showed so many acute problems and diseases and who had walked out of the hospital with no medication.
It strikes me that this situation gets out of control in the following way: Various doctors guess at what could be a problem and prescribe various drugs for conditions which the patient might have. The patient starts to get better probably because of the body's natural ability to try to heal itself. No one knows whether the things that they prescribed might have had some contributing factor to the healing, so they come to the conclusion that all those various drugs have to be continued: blood pressure drugs, anti-psychotics, anti-depressants, etc. If it wasn't for the fact that they recognized that some of their drugs had caused the deliria and therefore were afraid to give her anything else, we could have had a very different result.
On the day that we left the rehab center, my mother had me drive her not home, but straight to her piano teacher's association meeting. We walked in to great applause and surprise. Some of them had seen her in the hospital just a short time earlier, practically comatose. She helped introduce the performer that she had booked, Ren Zahn, and even participated in the meeting afterwards attempting to resign as program chairman, but nobody accepted the resignation. When she was comatose in the hospital, they had panicked, because nobody knew who she had scheduled. But now she is back booking artists for next year again.
Two days after returning home, she gave her first piano lessons with the students coming down to the house. The following week I drove her to the house of another student. We had nurses there most for the day to help her with what she needed. About a week later while I was out and before the nurses could do anything about it, she took the car out of the garage and drove to her Monday lesson, quite successfully.
Recently I took her to the funeral of Trudy Steinberger, who died suddenly at the age of 86. Trudy's daughter and my brother Bill had died in a canoe accident many years ago. My mother reached out to Trudy and they had become best friends from that time on, for over 30 years. My mother even introduced Trudy's daughter, Joella, to her future husband, one of her former piano students. When we went to their daughter's bas-mitzvah this year, the girl pointed to my mother and said, "If it wasn't for her, I wouldn't be here." There's a chapter about this in her book, about "loss." Trudy and Joella even visited my mother in the hospital. But as shocked and saddened as my mother was, she was pleased that Trudy had left quickly and peacefully.
"That's the way to go, she said." But of course, my mother had picked another way: coming back from the dead.
Now she drives everywhere, is getting new piano students, and has far more energy than she did before she broke her hip. In addition, she is back plugging away on the telephone arranging radio and TV appearances for her and her friend Ray to promote her book.