A couple of months ago, when my mom was waxing and waning in and out of delirium, I was feeling at my wit’s end.  One day, two rabbis at work randomly ushered me aside, one in the morning and one in the afternoon, asking me very intently not only how my mother was doing, but also how I was doing.

Both times, the caring gesture touched me so much, I burst into tears. One of the rabbis gave me a book of contemporary prayers, to help bring me comfort and offer me something to hang on to. She promised that during the children’s Friday night service that week, she would have the kids send healing prayers to my mother. The second rabbi held the space for me to talk at length about my experience and feelings, then promised to include blessings for my mother in his morning prayers.

Was it coincidence that two days later, my mom began – for the first time in the 6 weeks since her accident – to pull out of her delirium and show signs of her personality returning?

A few days ago, I reached my wit’s end once again. Among other things, I was physically ill and on antibiotics.  In addition, I was so depleted and wracked with anxiety, that felt like a tangled ball of knots, eaten up with worry. 

I realized that my mental state was ultimately counterproductive; that I had to take a step back and return to prayer. So I sent an e-mail to a ton of people I know and community listservs, asking everyone to pray for my mom.  I also put another post on my blog, requesting the same.

Was it coincidence that the next day, my mother was in good spirits and far more lucid than she had been in two weeks?

I have come to feel that I need to achieve a balance — not between action and acceptance/letting go per se, but rather between action on the physical plane and action on the  spiritual plane.  There are times when I must engage in patient advocacy, and there are times when I must mobilize the energy fields to support my mother (or whatever ailment I am taking action to heal).

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Small gestures can have a big impact on people — both for better and for worse.  Take the examples from my second round of recent travel up north, to take care of my mother.

Trading places

I had to fly in the middle of the afternoon.  I generally make a point of traveling on the last flight out, late at night, on Saturday night if possible, because very few people fly then. Among other things, flying when nobody else does helps me avoid the very situation that I encountered when I had to go smack in the middle of the afternoon:

I was sitting in the back of the plane, in an aisle seat, with an empty seat between me and the window seat.  When there were just a handful of people left trickling onto the plane, a very large man came and sat in the middle seat — spilling well over into my seat.  I knew that if I sat next to him on the flight, my body would be twerked the entire way, and I would end up in horrible pain, not just on the plane ride, but for hours or days after.

So I spoke up: I said to the flight attendant that I have chronic pain and a hypersensitive body, and that I could not sit like that for the duration of the flight. I spoke loud enough for others around to hear, in the hopes that someone would volunteer to trade with me. Quietly, I said something to the man as well, along the lines of acknowledging that it was the fault of the impossibly tiny seats, and recognizing that he must be uncomfortable too. 

As it turned out, the wife of the man next to me was sitting in the middle seat, in the row behind us.  She said something to the effect of, “Well if you’re not going to sit there, I would like to sit next to my husband.”  A woman in an aisle seat one row behind and across from me then offered to give me her aisle seat and to sit in the middle seat in the row behind the man in question, thereby allowing his wife to sit next to him in the aisle seat I was giving up.

Wow.  I could not thank her enough.  I let her know that she had speared me terrible pain.  I also asked for her name and said a prayer for her in my heart.

Lightening My Load

Here’s another reason why I avoid travel in the afternoon: The shuttle to the rental car was packed, meaning that among other things, I had a hard time maneuvering my bags onto the shuttle.  I asked the driver for help, explaining that I had a disability, but he was a total asshole, snapping, “That’s not part of my job.”  A woman who had been on the plane ride with me, and who had witnessed the whole seat-switching scenario, offered to help — lifting both my bags onto the shuttle and snuggling them in next to the other bags.

When we reached the rental car destination, the same woman said to me, unprompted, “I’ll get your bags down, don’t worry.” She then proceeded to take them off the shuttle, as I exited.  Apparently, being that she had her family’s bags to take off the shuttle, she asked another woman to help with one of my bags.  In stark energetic contrast to the first woman, the second woman brought my bag with a hostile expression on her face and terribly aggressive energy, so that when she dumped the bag just shy of my foot, I felt as if she had rammed into me.

Refusing to Budge

I got in line behind two people, waiting for one of the two rental car agents.  When it was my turn for service, one of the agents darted into the back office, just as I approached the counter.  He reappeared a few minutes later, talking on a cell phone and grabbing something from the counter, then dashed back into the office.  I waited well over five more minutes, but he did not reappear.

I told the second clerk that I had been waiting about 10 minutes by then. “Just a minute,” he said, “he will be back to help you.”  I waited a couple more minutes.  “I have an emergency situation,” I said to the second clerk.  “My mom has just been admitted to the emergency room. I can’t wait anymore.”  “I’ll be right with you,” he said, continuing at the same pace with his customer, nonplussed.

I tried opening the low door standing between the customers and the clerks, so that I could walk into the back office, but it was locked. So I started yelling into the back office, saying that I had an emergency and needed service immediately.  No answer, but I did get a lot of looks from other customers. 

I turned back to the second clerk and told him it was absolutely unacceptable to keep me waiting so long, especially considering that I had an emergency situation. I was intentionally being very loud, to get him to take action, and it worked.  He finally excused himself from his customer and went into the back office.  As it turned out, nobody was there; the first clerk had skipped out.  “I’ll be right with you,” the second clerk said to me, returning to his customer.  At that point, I left him alone until he finished.

Holding My Hand

The next morning, I went down to the Starbucks in the lobby of the hotel where I was staying.  The barista, a good-looking guy with whom I had a few conversations during my previous stay, asked how I was doing.  I answered honestly, saying that my mother was back in hospital, and sharing some of my feelings about it. 

He listened compassionately, and he just had such good energy about him, that I asked if he believes in the power of prayer.  He said yes.  So I asked him to pray for my mom, telling him a few details about her — to help direct his prayer.

I had done the same thing with taxi drivers, waitresses, concierges, and other random nice people up and down the coast of California. But this interaction was different. Instead of promising to pay for my mom, this guy took both my hands in his, closed his eyes, and said a prayer right then and there.

I had been rattled and frightened, totally ungrounded and in a bad mood up to that point.  But I felt so comforted and nurtured by this gesture, that it set the tone for the rest of my day — leaving me feeling much lighter and happier, as well as thinking positively again.

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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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It’s been a medical nightmare. My mom has been in and out of the hospital, for pneumonia that could, and should, have been prevented. She is back in again as of tonight. I, meanwhile, have been feeling exhausted, depleted, and tied up in a knot with anxiety and fear. (more…)

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On Friday morning, starting at 10:00 a.m., I left four messages asking the primary doctor to call me.  Because it was the start of a long weekend, I was especially anxious to speak with the doctor before 5:00 p.m.

Although I did not receive a message, I was told — the second time I called — that the doctor had tried to reach me when I’d stepped out of the hotel room. Apparently, she only had called the hotel number. My cell phone number was in my mother’s chart, so why didn’t the doctor call it? When I’d left the hotel room, I’d actually thought about calling and leaving that number again, but I specifically didn’t want to deal with feeling like a pain in the ass. 

I’m learning, again and again, however, that one does have to be a total fucking pain in the ass in order to get anything done in the medical world. Being a patient or patient advocate is the equivalent of assertiveness boot camp, where the stakes are life-and-death.

Meanwhile, out of nowhere, my mother was completely nuts all the morning and afternoon. I’d been assuming she hadn’t received any narcotics since my conversation with the doctor the night before. The third time I called, however, I asked the nurse if they had put her on narcotics again. 

“We gave her Vicodin at 8:30 this morning,” she replied.  “The doctor last night specifically said that he was taking her off all the narcotics!” I replied, alarmed.  “That was the doctor on-call,” she said.  “You need to speak with her primary doctor.”

Put aside for a minute the fact that I was specifically trying to have a conversation with her primary doctor.  Isn’t it common sense that the on-call doctor would note in my mother’s chart the discussion we’d had, recommending that my mother be taken off all narcotics? 

As I discovered, the morning shift had not even tried first getting my mother Tylenol and ibuprofen, before deciding that she needed a Vicodin.  I told the nurse, in no uncertain terms, that I did not want my mother on any more narcotics. She agreed, but as it turned out, there was still a major struggle ahead.

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