Saving Rubies

by J. Newman Kelly

Ruby grabs an open package of hamburger buns from the refrigerator. A few fall on the floor. She picks them up and puts them down on a plate, but then she puts another plate on top of them as if to make a sandwich with the plates pretending to be bread and the bread pretending to be filling.

If she were a conceptual artist, this might be a conscious decision. However, it seems more likely she has fatigue so profound that the rules for recognizing and handling familiar objects in the usual ways are no longer available.

She removes the plates and takes butter from the refrigerator. Minutes later, though butter is on the table in front of her, she opens the fridge and gets another carton. She leaves the doors open in between these trips to remove or return food. If I close the doors, she reopens them and leaves them open again. Finally, after a robotically patient interval, the refrigerator beeps to say its doors should be closed. She ignores the beeping. It no longer registers. All the doors in her house and most appliances now have alarms. They form a beeping Greek chorus. The sounds connect a momentary failure to manage one device or another to a more significant trend — a warning that while it is only another door left open — Ruby’s need for help is increasing.

She takes out a jar of jelly. Then two. The buns become raspberry and sesame. She carries heavily buttered and jellied buns toward the toaster. I decide I need to deflect her. I can’t be sure if butter and jelly melting next to the coils will be harmless, but we don’t need to run that experiment just now. Fortunately, we have plenty of fresh plain rolls I can toast before they get slathered with butter and jelly.

There has been a breakdown of many of Ruby’s routines and everyday habits. Among those of us who still have them, these habits are usually unconscious. For Ruby, these habits are now too expensive to remember. They would use too many of her shrinking cognitive resources that she must save to maintain her fragile and desperate connection to people, to meaning, and the hope of some uncertain rescue from her isolation. Like the beleaguered captain of a lifeboat, her brain tosses objects overboard. She loses not only her “to do” list but also her “need to know” list and even her “known to exist” list. Not enough capacity for those now. Her neurons are saving themselves for more important tasks, like watching people and catching their reactions. She is acutely watching my face for clues. Do I think she has skipped a few steps down on the stairway of her decline?

“I see you,” she says. “You seem worried.”

“You’re right… I am concerned,” I say.

Better to not hide or misrepresent my feelings. Ruby gets too much of that from others, some old friends, and some medical professionals with a limited history of engagement with her more recent, declining, but still resilient self.

I have thought little about the film Woman Under the Influence in decades, but it comes back to me now. I have forgotten most of it. But like Ruby, even after my memory tosses details overboard, I can still feel their emotional echo. I recall that a mother, played by Gena Rowlands, returns from a mental hospital after a breakdown. By treating her as fragile and impaired, her family takes away what she needs to return to consensual reality. Trust.

She needs to see that others believe that her grip on reality is trustworthy enough to take small steps with her in a shared version of it. People whose experiments with living are not going well need a laboratory or a greenhouse where a few things work. Otherwise, they will give up entirely. At that point, even powerful drugs and dedicated doctors won’t be able to bring them back.

A sandwich made of plates with the bread in between is pretty wrong, but it’s not like she tried to eat it. If she were a startup in Silicon Valley, she would pivot, find a new Minimum Viable Product, and eat that instead. She gets there eventually without being made wrong just by accepting an alternative — a fresh bun.

“Shall I toast this bun?” I ask.

“Yes,” she says.

The simple act of agreement builds on our trusted relationship and her connection to the world. Her choice, her consent to the idea of toast first, then butter and jam, can have something like its desired effect. She says yes, and I toast a bun. She can add as much butter and jam as she likes. Because her grip on reality is wobbling, this becomes a revelation, a blessing, something that may mean this day will not end with the bottomless dread of being in a world that is not her own, one where she is not sure anyone she trusts can visit.

I try to limit the number of times per day that I have to say no or distract Ruby from what she appears to be trying to do. Safety is always the overriding concern, which is the main reason to say no or advocate something else. Another consideration is the effect this will have on her frustration over figuring things out from the perspective of her new limited self. She will test what she thinks she wants against the social and safety norms that a caregiver represents.

The way she goes about discovering what works for her is not the path I would choose and often not an approach that I think will work. We see things differently, but I also have additional responsibilities concerning whatever she is trying to do. First, I must make sure that what she is doing is safe and then explain what she did and how I responded to a chorus of concerned overseers, including her family and several agencies involved.

A few months into my time with her, Ruby fell several times. The serious falls happened while I was away on a trip to Boston. She made a trip to the ER with another caregiver. When I returned, Ruby had two dramatic black eyes. Walking with her to the grocery store or the gym produced an odd twist in our public social status. Strangers might wonder whether I had caused her black eyes, especially if she did something unsafe in public, like stepping into the street against the light, and I rushed to restrain her physically.

One of her other caregivers, a black man, was acutely aware of how strangers could misinterpret his presence. He was religious about wearing an official badge that said he was a caregiver. Ruby would be furious if I did that or if I told anyone I was her caregiver. When we went out in public, she wanted me to be her “date.” She expected me to buy her things and hold her hand as we walked, not with a caregiver’s trained arm support that offers the best protection from falling but with the relaxed grip of an old married couple, which was what we appeared to be.

My discomfort with this deception vanished when I considered the larger reality. Ruby had lost so much. Holding hands with her and acting like her partner in public created a gentler unreality, one she wanted to experience as she tried to match her fragmentary and chaotic memories with what the world presented as currently real and unavoidable.

It helped that she was attractive for her age. She was at least a decade older than me, but that was not obvious. She was in excellent shape and dressed stylishly. Strangers seeing us holding hands in public would smile and say that we made a lovely couple.

Before I came along and during my time with her, Ruby went through several caregivers. Something would go wrong, and she would become frustrated and start hitting them. These were light slaps and were relatively harmless, but they were disconcerting and drove away a few otherwise sympathetic caregivers. She slapped me once when I introduced myself as her caregiver instead of as her friend. Over time, I learned how to read her well enough to avoid getting hit.

A neighborhood church was showing classic movies and serving refreshments with a discussion afterward. The community knew Ruby and essentially understood her condition and accepted her. I knew she could not track a movie’s verbal complexity, but she seems to derive meaning and satisfaction from the drama and by being in the community. I also thought the buffet would be satisfying. She enjoys eating, and because of her metabolism and exercise, she can put away calories that would immobilize most of us who do not dance and exercise as much.

Unfortunately, the buffet was well-intentioned but sparse. I saw Ruby reach for the orange juice carton. At home, she drinks everything in the refrigerator out of the carton with the abandon of a teenager. She dismisses anything I say about health risks as “bullshit,” a word she has no difficulty recalling. When it’s her house and her refrigerator, this comes with the territory, but we were in public. Our hosts expected us to use glasses or cups. I put my hand over hers on the carton before she could lift it to her mouth.

“Our hosts do not want us to do that, Ruby… can I get you a cup?”

She gave me a light slap as she said, “You took all the food!”

At times like this, I recognized that Ruby and I lived in parallel, yet separate realities. We were late for this buffet, so the offerings were more limited than I had hoped. If there was not enough food, she thought it must be because I took it. I got a paper plate and tried to put together a collection of omnivore-friendly protein that she might accept. She let me do that, but our window of social acceptability had closed. She would not be quietly attentive until she had her expected dinner. So, we left the church and got food from a restaurant she knows and likes.

Learning from mistakes has a different meaning for Ruby than it would have for those of us not coping with advancing dementia. She will not learn from mistakes with the stove or the toaster. These appliances are potentially dangerous to us, but to her, they are not important enough to use her diminished memory to relearn to use them safely. I strongly suspect she is still learning. She focuses her scarce resources on whether her relationship to reality she cares about is working for her. She is asking about and paying close attention to who and what she can trust.

Several times a day, she gets frustrated with her inability to communicate. She gestures dramatically, pushing her arms down as if she were swimming up to the surface of a pool in which she is drowning. If the frustration is moderate, she waves at the air, and I try to guess what she might be saying. Again, if her frustration is mild, she may enjoy and even laugh at my attempts to find the meaning in her gestures and sentences with missing words. If her frustration appears too high, I know better than to attempt this. I may say something like, “Ruby, what would you like to do now?” I may or may not get an answer.

Ruby’s default response to frustration is to move. Get out of the house. Buy something — makeup, cookies, ice cream, a latte — or go to a gym where she can exercise. When her fear, anger, or frustration are high, she might say, we have to go out, but she won’t give me a destination. On several of these safaris without stated purpose, she first detours in a neutral direction, then turns and starts walking towards downtown Oakland.

“Can you say where we are going?” I ask.

She says no or doesn’t answer.

“Are we going to the green building?”

She may or may not say yes.

We head toward a medical complex a few miles from her home in Piedmont. She can and will walk for miles to reach a destination that is important to her. We are on a pilgrimage, one that is more spiritual than medical.

When we arrive, she will march up to the information desk. The first time she did this, I was concerned both for the person behind the desk who might get confused and for Ruby, who would probably not respond well if the medical staff started treating her in terms of her limitations — as someone who does not know or cannot say what she wants or why she is there.

Fortunately, the staff from the information desk to the clinics are well-trained and deeply experienced. They face daily epidemics of inappropriateness. They have seen it all.

The man at the information desk is on the phone. He asks us to wait a minute. Then he puts the phone on speaker. It’s a familiar ‘on hold’ message from somewhere else in the complex. “For English, press one… for Spanish press two.” To Ruby, this is an opportunity to play, to improvise. Remarkably, for a person who cannot recognize different appliances or plug a phone into a charger, she truly understands and appreciates improvisation. She echoes the phone, and the man behind the counter joins her. Two live voices synchronize with the recording saying, “Press four.” Ruby and the desk clerk laugh together. For at least a few seconds, there is no need to be rational. Play is doing for adults what it usually does only for children — creating shared meaning out of what will not otherwise make sense.

Ruby turns and abruptly heads for the elevator. She pauses and runs her hands over the pictures of the medical staff. Only the high-level administrators have images displayed. She does not see the doctor she is looking for.

We get in the elevator and go to the third floor. Ruby heads to the reception area. The receptionist’s name tag says Jewel, which is also Ruby’s nickname.

“Do you have an appointment?”

Ruby does not answer.

“I believe she wants to make an appointment,” I say.

“Do you have your insurance card?”

Ruby takes out her credit card. All cards are the same to her. They belong to a category of objects beyond her current ability to track. Jewel doesn’t miss a beat.

“That will work.”

She uses the credit card to look up Ruby’s record.

“I think there may be a doctor she saw some time in the past that she would like to see again.”

Jewel dives into the database and starts reeling off the names of doctors who treated Ruby in the last year. There are quite a few. But when I offered to set up appointments with these doctors back at her house, Ruby said no.

Jewel, sensing that the issue may not be physical, suggests seeing Dr. N., the neurologist. When I recommended him earlier, Ruby said no. Now she accepts an appointment with Dr. N. The difference between her rejecting the idea at home and accepting it now is that we are now on her safari. Even though she is arguably not in control, she asserts her intent to get help. What we have offered her up till now is not enough. By probing, she can get closer to what she cannot accept from others as reliable, but she now senses it might be good enough.

Ruby’s appointment with Dr. N. is exasperating. He is empathetic, quite aware of how she is suffering. He knows that some approved treatments, including Aricept which was prescribed for my father 30 years ago and failed to help him, will probably not help Ruby either.

We know that acetylcholine is essential for cognitive processing, and we know it declines with age and declines dramatically in some dementia patients. Aricept increases the availability of acetylcholine. So, should Ruby take it? It won’t hurt. Might help. The inconclusiveness is unsettling, but given the current state of verifiable medical knowledge, there is no way to escape it.

What about popular informal therapies that Ruby has pursued? Dr. N. scans the ingredients and origins of bottles she brings to him. Privately, he tells me they are safe but unlikely to help her. He lets her order them to have some greater sense of agency in fighting whatever is ravaging her mind.

Even though I find the appointment with Dr. N. unsettling, Ruby becomes relatively calm. Later, we go on several more medical and spiritual safaris. I find out that the mystery doctor she was looking for is not Dr. N. but is not a complete fantasy either. He is probably her oncologist or someone who helped treat her cancer years ago. She remembers this doctor treating her with care and respect. Her dementia had not progressed to its current level back then. It is that level of care and concern she is seeking. Even cancer and dementia are no match for the strength of her desire to return to the support that she remembers and believes is still possible.

As in every story involving dementia that I am aware of, this one did not end well. Workers removed the alarms from the doors of Ruby’s beautiful house. Even with 24-hour live-in help, she could no longer live there. The house has a new owner.

The state of California is progressive, both medically and culturally. But only recently could scientists safely explore whether powerful drugs that increase our access to unconscious experience have beneficial effects outside of their hallucinogenic properties. Ironically, the scary properties might be side effects. Despite all the negative attention these drugs receive, the genuine miracle of at least one of them might be that it stimulates our brains to grow new cells. New cells could form fresh memories and allow us to hang on to our identity despite disease and age.

Hallucinogens like DMT may help us grow new brain cells, replacing at least some of those ravaged by disease, chemotherapy, and time. This has happened in animal experiments. If scientists can confirm there are safe human equivalents, these drugs may make it to our medicine cabinets in a decade. Unfortunately, that will be far too late for Ruby.

She could be watching us now from another place. Some human experimenters claim DMT provides a preview of places beyond our current reality. If she is there and watching, she might laugh at us now. As her memories faded, she could not safely make toast, plug in appliances, nor find the doctor who had helped her defeat cancer earlier in her life. Despite these losses, she kept searching for help, and never forgot how to play.