For a fiftieth birthday gift, two friends bought me a session with a famous astrologer. I thought the entire idea was ludicrous. I’d spent my whole career in a scientific field—specifically medicine, sub-specifically anesthesiology—which does not lend itself to astrological interpretation or intervention even though I acknowledge that crazy stuff happens when there’s a full moon. But I’ve never been one who “believed” in astrology. I occasionally read my horoscope in the newspaper mostly because it was next to the Jumble. It never revealed anything meaningful. But I was at a low point; dementia takes its toll on family as well as on the afflicted. Besides, I hoped the astrologer could make an educated guess as to whether there might be love in my future. I obviously wanted a pass on long life if it involved senility and I didn’t much care about fortune, as I knew that work suited me better than leisure. Leisure—in my case—usually meant bug bites, puffy eyes, and large credit card bills. I made particularly bad decisions when idle. I’d read articles about people who won the lottery; it ruined most of them. So I knew better than to relax and let tranquility destroy me. But who didn’t want love?
Out of curiosity I visited the astrologer—a doughy woman with thinning hair—who worked in a Chicago office south of the river near the old Carbide & Carbon building. She recorded our conversation and spoke with startling accuracy about my past. She stated that my birth circumstances were unusual and I didn’t fit the typical description for my sign. I had been born in the brief time span between a lunar and a solar eclipse. “Your life must seem fated,” she murmured, her voice deceptively bland. “As if life pushes you in a particular direction.” I had not thought of my life as ‘fated’ as much as a litany of incredible coincidences. Sometimes I had an uncanny ability to see signs that strangely forecasted events, even warning of imminent danger. I typically ignored them.
“Taurus fits you better,” she said. “Read that horoscope in the paper.” Perfect. I’d been reading the wrong horoscope my whole life. No wonder it seemed useless.
“There’s something highly significant about your chart, an unusual division of the elements. You have four planets in air signs—it gives you an uncanny ability to communicate, and extreme curiosity. You’re mentally young for your age. Quality or modes—five are in fixed signs—that’s a sign of tenacity, not an Arian quality. The downside of tenacity is that you don’t know when to let go. You need to learn to trust your intuition. Even if intuition goes against what you’ve been told.” I agreed with her that I didn’t know when to let go. But my intuition was better than I thought? What if my intuition told me not to trust my intuition?
“You have lots of planets in work. Innovation, creativity, research. You like finding things out and putting a different spin on it,” she said.
“Between now and April 9, 2013, there’s a new development level. Then a static period. Until the new moon in 2016. You’ll want to lay the groundwork for any creative work before 2013. There will be a lot of wasted time and energy during those three years. You’ll feel guided by others. Use it to do inner work. Maybe go to an ashram. You’ll want to have flowers, perhaps buy some property.”
I had to ask. “What about love?”
“I don’t see much happening with your Venus. Have you tried Internet dating? That might work for you.
I had tried Internet dating. It did not work for me. I was writing a book about how it did not work for me, among other things.
One other thing the astrologer mentioned—I should prepare for my mother’s demise.
The retirement community where Mom lived provided two meals a day, weekly cleaning, and laundry service with the monthly assessment. You could pay extra for certain amenities, like having a nurse stop by once a week, once a day, or multiple times a day and hover—tapping her foot impatiently—while your parent took her medications as slow as humanly possible and with her face set just so. There were additional charges for bathing and hair care. For a fee your mom could take the bus service to the local grocery store as well as a number of different churches and medical centers, wander around, get lost, then get picked up again after having no recollection of where she’d been or what she’d done. The retirement community offered organized activities such as bingo, musical events, movies, and sing-a-longs. Mom didn’t participate until her dementia advanced and Vicki encouraged her. Vicki could get her to enjoy herself. I didn’t have the patience.
When Mom turned ninety my sisters and I took her to Florida to celebrate her birthday. We lost her at a shopping mall in Boca Raton.
It turns out that losing old people is a major problem. Those with dementia have a tendency to wander off or even drive off. Time is critical and the outcome is often bad, meaning they are found dead. My sister Beth and I sat together in the shoe department at Nordstrom—Beth was trying on something comfortable, expensive, and ugly—when I let Mom walk to the bathroom by herself. After all, I could see the entrance to the Ladies Room from my chair; it was less than fifty feet away. And we—I—still managed to lose her. What did it mean cognitively? She took a wrong turn; it could happen to anyone. Luckily, we were at an indoor mall, I remembered exactly what she was wearing, and the mall was in Florida where losing-old-people happens with some frequency. Security uses segways, allowing them to find missing-persons with a reassuring rapidity. They found Mom within twenty minutes—she’d wandered amazingly far in a short period of time—and without her realizing she’d been misplaced.
I don’t consider us lucky that Mom wandered off at the mall that afternoon in 2007, but we were fortunate that it happened when my sisters and I were together. We were forced to deal with it. We all recognized that Mom had crossed into a territory beyond which there was no turning back. The implications, the inconvenience, and the cost of this next giant step forward seemed enormous. But convincing our mother that she needed a caregiver would require another two and a half years. We had to balance her safety against her autonomy, her freedom against her dignity. Role reversal took on complex layers of meaning. We used the utmost care in how we approached various issues—her medications, her checkbook, her finances—and each of us did it differently with equally poor results. We had already taken away her car after she’d broken her neck while playing golf at the age of eighty-eight. She wanted to maintain what precarious independence she had left. We did not blame her.
Dementia doesn’t look the same every day to every person. It doesn’t always sound like anything out of the ordinary over the phone. Mom had days when she could carry on a conversation as if she were twenty years younger, days when she remembered the names of all her grandchildren, where I worked, all the details of her past life and mine. And on those days, I agreed with her that she did not need a caregiver. But then she would ask me a question about a topic we had discussed just moments before. Her short-term memory could turn itself off and on and off, unpredictably. The ability to remember what just happened, where you are and were and what was said allows you to function in ways we implicitly take for granted. Our tendency, as offspring, is to use all the available evidence to underestimate how much our parents have declined mentally—it’s a well-described cognitive bias called the valence effect, or optimism bias. It’s also known as wishful thinking. In the evenings and at night, Mom often hallucinated. When I called in the mornings, she would describe her hallucinations to me. It’s hard to pretend everything is okay when your mom describes a midnight visit from a long-dead dentist.
Now I try to deconstruct those experiences with my mother. I think I was levelheaded at the time, but in retrospect I wonder. Dementia plays you like a seesaw, only the fulcrum refuses to stay put. As adult “children”, we struggle with how to make decisions for the parents who once made decisions for us. We often depend on physicians but aren’t certain who to trust because of the conflicting information and advice. The flip side of wishful thinking is to err on the side of caution, which means doing too much of everything, whether it’s indicated or not. Who wants that kind of medical care?
Early in the summer of 2009, Bonnie and I met with a man named Robert who had recently started a caregiver agency. We sat with him in the lobby of the retirement community where Mom lived.
“Perhaps you could ask your mother to train someone to work with the elderly,” Robert suggested as a way to gently deceive Mom into allowing someone to help her. “I ran into the same problem with my mom. She didn’t want anyone in her home, even though she clearly needed help.”
We took Roberts’ advice, slowly introducing a young caregiver into our mother’s life. Mom wanted none of it. Over a month and with a lot of verbal maneuvering, she gradually, begrudgingly and without her usual grace, came to accept the intruder’s presence in her home. We started with four hours a day, five days a week. She fired the woman six times. And then one night in August of 2009, Mom fell out of bed and broke her arm.
The nurse where Mom lived called Bonnie first and the ambulance second. I arrived at the local hospital when they had been in the emergency room for an hour. Dr. Helms, Mom’s geriatrician, had decided to admit her because the pain medication made her more confused and ambulation would be an issue. She had broken her proximal humerus, just below the shoulder, which meant she could not push herself out of a chair. Luckily, she didn’t require surgery.
Mom and Bonnie and I waited hours in the ER before we were taken to Mom’s hospital room. They had assigned her to a general medicine/oncology floor. Because of her age and dementia, she was given a room near the nursing station. Bonnie and I had warned the nursing staff that she might wander, was at high risk for falling, and was likely to become increasingly confused by the unfamiliar environment. A number of nurses and aides came and went, trying to get her settled as the afternoon shift change approached.
I asked a nurse if we could bring up the guardrails on the bed so that Mom would not fall out.
“No, we don’t elevate guardrails on beds anymore. That’s considered a violation of patients’ rights. We have an alarm system that we put in place if you think she is likely to get out of bed.”
“What kind of alarm system?” I asked.
“There’s a sensor on the bed,” the woman pointed to a pad under the sheet. “We just hook that up. And then we place a pad on the floor beside the bed. We’ll push the bed itself next to the wall so that she can’t get out that way. The pad senses when she moves off of the mattress, and the pad on the floor has a sensing system also. It’s illegal to ‘confine’ patients now.”
I tried to take this in. Make sense of it. “So basically Mom is free to fall out of bed, get injured, and then the alarm will sound. But she would be illegally confined if we put up the side rails to prevent her from falling out in the first place. She has the right to be harmed, but not be confined,” I said.
There is no way that one system fits all patients, neither in concept nor in implementation. To protect some, we harm others. The rights of patients, as defined by politicians, were a rabbit hole.
“Well, no…the alarm sounds when she starts to leave the bed and someone at the nurses’ station hears the alarm and comes into the room,” the nurse assured me.
Maybe I look stupid. I don’t think I look stupid, but I’m often underestimated. I think it’s the blond hair. But I’m much smarter than I look. And I’d spent decades in hospitals listening to alarms go unattended at empty nursing stations. Hospitals—nation-wide—have staffing issues. Let’s not pretend here. I don’t know a single person who has ever worked in a hospital who has not had the experience of listening to alarms and call buttons ring and ring and ring. So I knew exactly what this whole scenario meant for my mother. We had a barn door and horse situation. Mom was already disoriented. Hell, I was disoriented! Add some pain medicine and she’d be hallucinating in no time. I closed my eyes and shook my head.
“It’s against the law to confine someone.” I heard stridency in her let-me-tell-you-the-rules voice, the certainty that creeps because if something is illegal, someone somewhere must have given it some thought, right? Instead of what really happens, instead of the massive bureaucratic compromises that actually occur in public policy everywhere particularly as applied to health care. That’s how our system works. Never assume common sense has been applied at any step along the way. Ever.
“But it’s not against the law to prevent them from falling out of bed,” I said. I wasn’t going to point out the obvious: that was how she’d broken her arm in the first place. And that occurred in her own home. Now we had a state law designed to protect patients that effectively accomplished the opposite. Doesn’t that define the law of unintended consequences?
“We’ll keep a close eye on her,” the nurse told me.
Right. I knew how that would go. Bonnie or I would need to be there twenty-four hours a day. Or we would have to hire someone. The good news was that Mom’s arm hurt enough that she wouldn’t use it to try to move around too much right at this moment.
“Can I go through her medications with you? I want to make certain that I have all the orders from Dr. Helms.”
I sat down and gave her the list of medications, allergies, food preferences, and then I told her to make certain the chart shows that she is Do Not Resuscitate.
The nurse gave me a cold look. “Are you the power of attorney?”
“Yes, I am,” I said mildly.
“And I suppose you have the paperwork with you? Is it something you carry in your purse just in case?”
I took a very slow deep breath. I took a cleansing breath. A do-not-lose-your-temper-now or you’ll-regret-it and your-mom-will-suffer breath. I searched my heart for my hard-earned clarity with regard to this bullshit. Where the hell was it?
“No,” I said, “but I can have it faxed if you give me the number.
Or I can bring it tomorrow.”
“Fine,” she said. She spun on her heel and was gone from the room.
This had turned into a completely ridiculous situation. And I’d made an enemy. My sisters and I decided that we did not want our mother resuscitated in the event of a cardiac arrest. We had discussed it with her physician. He agreed with us.
My mother’s life, at ninety-two, consisted of spending all day every day in a chair, staring at a television screen, unable to hear the dialogue, unable to read the words that ran across the bottom for the hearing-impaired. She looked forward to visits from family members, and then promptly forgot who visited as soon as we were out the door and complained that no one visited her. She was plagued by arthritis, confusion, loss of memory, and disorientation. Her bowels were completely unpredictable and a source of ongoing embarrassment and distress and pain to her. Until she forgot them too. That pretty much described a typical day. To make matters worse, she knew she was losing her mind and it tortured her. Imagine what that’s like, she often said.
If she were to have a cardiac arrest, a code blue team would rush into her room, pump on her chest, deliver an electric shock that jolted her entire body, put a tube down her throat, give drugs such as epinephrine, vasopressin, amiodarone, etc. Unfortunately, the rate of successful resuscitation of in-hospital patients over the age of 70 is around12%, though the data are all over the place. Resuscitation is one thing. Survival to discharge is quite another. Data for patients over ninety remain sparse, but are probably in the range of 3-5% survival. That’s how many survive the arrest. Very few actually leave the hospital. No one has looked at one- or three- or six-month survival, as far as I know. And I’ve searched. With a diagnosis of cancer the resuscitation rate is incredibly low, typically less than 5%. The numbers that are available do not parse out the quality of the resuscitation, meaning whether individuals who have been resuscitated are cognitively impaired, or even alert, or back to normal. It is generally assumed that resuscitation means they are simply alive. Our mother’s dementia had significantly worsened over the previous four years. Performing cardio-pulmonary resuscitation—it seems safe to assume—would not improve her mental status. If anything, were she to be successfully resuscitated, she would be even less with it than before. And a thirty-year old nurse was trying to shame me for not wanting that type of care for my beloved mother, who already was suffering. I would tell the nurse to go f**k herself, or better yet, educate herself, except that she’d probably take it out on my mom. And the problem really wasn’t this one nurse, it was the system that led her to believe that indiscriminate resuscitation constituted appropriate care in the first place.
We live in a society where we act first and think later, or don’t think at all, particularly with regard to resuscitation. Life at all costs! Life at any cost! And the medical establishment is implicated in this credo because of its very obvious, never discussed profit motive. Everybody gets resuscitated unless it is practically tattooed on your forehead, big oranges signs everywhere, your attorney and your physician at your bedside with legal documents in their hands at the time of your demise to prevent someone from instituting CPR. You could have every single organ system in total shutdown mode and they would still pump on your chest if you hadn’t dated the paperwork properly. And resuscitation doesn’t even work that well in the vast majority of people[i].
This is only one example, but it turns out to be an incredibly important example, of how far off-track American healthcare has gone. And I know. I’m part of it. I go to arrests all the time. Our emergency rooms and ICU’s are choked with elderly dying patients, often unaccompanied by relatives or paperwork, and nobody knows what to do so everything gets done until a day or two or three later when someone finally reaches a family member who says: Oh, Mom (or Dad or Auntie or Whomever) didn’t want to be resuscitated. We’d talked about it, we just never got around to filling out the paperwork. Please withdraw support! Resuscitation—by law—is a given; you must actively and with great difficulty opt out. In some states it’s nearly impossible. But more importantly, it is not one procedure, but a pathway. It is a pathway that starts simple but grows more complex, and that works well only in particular patients, costs money, often does harm, and—in the best circumstances, meaning in-hospital arrests with high quality CPR and ACLS (Advanced Cardiac Life Support)—results in thirty percent resuscitation. That sounds pretty good, but in fact only about five percent of survivors actually leave the hospital. And those tend to be the people you don’t expect to arrest; they usually have something treatable. Published statistics sound better than that, but I don’t believe them because I’ve seen how studies can skew results and it’s well documented that people don’t want to publish poor outcomes. Don’t even get me started on the research paid for by drug companies. There is high variability between studies; in other words, they aren’t reproducible. People arrest for a reason.
A few days after breaking her arm, Mom left the hospital for the nursing home facility affiliated with and located next door to her retirement community. This nursing home had the same type of alarm system as there had been at the hospital, with the sensor pads on the bed and on the floor. Mom was at the nursing home for no more than a half hour before she fell out of bed and landed on the floor in an attempt to go to the bathroom alone. Because of her dementia, she did not remember to press the call button for assistance. And because of the type of nursing home that it was—average, no better or worse than most—no one would have come anyway.
I called Robert and asked if he had someone available who could care for her twenty-four hours a day. He said yes and she could begin that evening. Bonnie and I packed Mom up and took her home. From then on, Mom accepted a caregiver without question. That’s when Vicki entered our lives. Vicki moved in, giving Bonnie and me a much-needed respite. Mom stopped fighting her battle for independence when Vicki arrived. She became docile. I breathed a sigh of relief at the same time my heart broke and I realized that the astrologer had been correct. The end was coming. Vicki took meticulous, loving care of Mom and Mom instantly adored Vicki. We were lucky that my father had planned ahead and saved enough for his and my mother’s old age so that we could afford to pay out of pocket for Vicki. We were lucky in an untold number of ways. It has taken me a long time to sort through them all.
For some reason, I returned to the astrologer shortly after my fifty-first birthday. Once again, I heard good things about my career. I heard about making connections, about my healing abilities. When I was born, Saturn was in a good place, career-wise. This would be life-long. The astrologer told me there was nothing happening with my Venus. Like I didn’t know that. Nor did she see it happening in the foreseeable future. And this woman looked very far into the future. She mentioned things that were going to happen in 2017. She said there would be unpleasantness around the 23rd of September 2010. That turned out to be the day after Mom died. Not the 22nd of September. So the astrologer was off by a day. No wonder I never believed in that stuff.
[i] Cooper, et al., Cardiopulmonary Resuscitation: History, Current Practice, and Future Direction, Circulation. 2006; 114: 2839-2849.