https://www.youtube.com/watch?v=bhjXqVTjE80

Note:

This page last updated 11.22.2018

 Bernice Zap broke through the surly bonds of corporeality and stepped across the event horizon and into the next phase of her journey at 5 AM EST 3/19/15

There were some extraordinary aspects to this timing:

3/19/15  4:55  AM Bernice is still with us which has even the very experienced hospice worker amazed, especially since she is breathing on her own and without oxygen.  She has had all the signs I saw with my dad when the end was an hour away for about twelve hours now. I’m not all that surprised because I know from long experience how tough Bernice is and determined to do things in her own way and at her own sweet time. For example, there were two separate instances in the late sixties/early seventies when the Bronx was in its worst phase where, on the first part of her commute to where she worked in Englewood, New Jersey,  the windshield of her car was struck by actual bullets. She kept right on going determined to get to her meeting on time. She was always the consummate professional at work, but underneath that she was also a tenacious fighter. When a mugger grabbed her briefcase filled with piano scores when she was on her way to a piano lesson she ran after him into Saint James park and yelled at him: “Give me back my music!”  Death may be waiting for her, but she is going to keep him waiting until she is good and ready.

3/19/15 530 AM At the exact moment I hit “update” on her page to post the above entry, the hospice worker came to me and said her breathing is slowing. Yesterday we discussed right next to my mom how to contact Carol, the day shift hospice worker in case she didn’t have to come in.  Carol told us repeatedly that 5AM was the best time to call her to catch her before she left her home for the subway. Bernice breathed her last breath at exactly 5AM. This seems so characteristic of her, able to hold on long enough for the family to reassemble and punctual to the minute to make sure she didn’t inconvenience anyone else.  More about that in a moment, but on a practical note there will be an 11am Friday service, that’s this friday, March 20th at New Montefiore Cemetery  and everyone is invited to lunch after at Verona Ristorante. Short notice, but 24 hours accords with Jewish custom.   If this is inconvenient for anyone, please don’t feel you have to break other commitments or responsibilities to attend. Like this page, which floats in cyberspace and can be accessed anywhere, Bernice is now similarly nonlocal and you will be just as able to contact her spirit from anywhere. Also,  as we saw with the 5AM Carol moment, it seems consistent with her personality and wishes not to inconvenience anyone on her behalf.

I didn’t want to mention this before, but when Bernice called me to tell me that her surgery had been rescheduled and that she had been having a series of dreams about the afterlife (see the status update dated 3/14/15 which is much further down this page), she also told me that the day of her surgery was March fourth and at the time I was struck by an eerie sense of the potential symbolism of that date because March Fourth is a also a kind of pun with March Forth! ( I was particularly struck by this correspondence because a few years ago I wrote something entitled March Forth! which could be title of the extraordinary image I discovered  and photographed the morning after my dad’s funeral (see below). For more on how this uncanny optical effect appeared please go to Nathan’s memorial page.   I feel that Bernice’s unconscious at least was aware that this was the time to March Forth! and it was clearly indicated by her dreams. A couple of strange details have also been puzzling us about the day she had her stroke. The day she came home form Mount Sinai following the surgery—and once again she was as sharp as ever and in good spirits—I physically put her Lifeline Medic Alert Pendant on her. She was well aware of the importance of keeping it on even while bathing. When she was found, however, the pendant was not on her and also the door to her bedroom was locked which was not her custom. It was as if she were trying to ensure that no one interfered with the opportunity to March Forth!

Thank you to everyone for your support and for continuing to keep Bernice in your hearts and minds where all who knew her will cherish her forever.

Scroll down to see an album of photos of Bernice I just put together entitled “Bernice’s 91-year Journey through Life.”

Scroll down for latest updates to this page. More photos and texts will be added as things are discovered in the house and elsewhere.

I originally posted this the day after mother’s day since my parents, due to some socialist values, never allowed the celebration of mother’s day and father’s day because they felt they were commercially created holidays. Shortly before the top photo was taken, I was with my mom when she was hospitalized with cellulitis and a high fever.  (the video was recorded the same day) Despite her condition, Bernice knew she had to be her own medical advocate and took a look at her chart. It was a good thing that she did, because there was a potentially fatal error. One of her most important heart medications was listed at 400% of her usual dose. She raised some hell as she should have, and later they casually admitted the error.  The only observable action they took was to add insult to injury by sending in a young resident to give her a cognitive test. She pointed out again that they had made a serious error not her, but the resident still had to carry out the test. Impatiently, my mom said, “OK, let’s get it over with.” A former child prodigy, and as sharp as ever despite the fever, Bernice shot back the correct answers almost before the questions were asked.

After the test, Bernice who was a clinical psychologist for 44 years and an expert on psychological testing said, “And now let me tell you the eight methodological errors you made with this test: First, you had no baseline…” Wish I had caught this on video.

Both my parents were great at fighting city hall and taught me never to be passive when dealing with mechanical bureaucracy. Thanks, mom and dad, for instilling me with many great skills of critical thinking, aggressive Socratic dialogue, and asserting myself against mechanical forces!

Bernice and Nathan were great examples of late-in-life creativity.  Sometime in her mid-fifties (same age I am now, same age my dad started painting again—see Nocturnal Visions—the Paintings of Nathan Zap), and while still working full time as a psychologist, my mom decided to revive the career path she didn’t take—classical piano. She had always practiced, but now she started getting up extremely early (maybe this is where I got my example for predawn writing sessions) to practice piano before commuting from the Bronx to New Jersey to her job. She went to Lincoln Center every week to take master class lessons from Dr. Mara Miropolskaya, a demanding and perfectionist Russian concert pianist (one of the best known in Russia before she emigrated). My mom got up before dawn everyday to practice for three hours before work.  By her sixties, Bernice was good enough to play a duet with Mara at Lincoln Center.

Something else I got from my mom was a love of reading. No question that it’s a privilege and advantage to have a cultured and intellectual stimulating atmosphere to grow up in. While there were many times I might have wished for warmer, fuzzier parents rather than scathingly intelligent and critical ones, I certainly benefitted from growing up in a household in which there was zero tolerance for sloppy thinking.  

During more than sixty years of marriage my parents never ran short of intellectually rigorous conversation. I was exposed to a lot of vocabulary, science and culture from day one. My parents were avid readers, but especially my mom who was a child prodigy, a speed-reader who by age ten had read every book in the small, rural public library near where she lived. While I didn’t, alas, inherit the whiz kid abilities of my parents (who could both assimilate complex material with inhuman speed), I did pick up their interests.  When I was about two and a half years old we took a car trip to Vermont to visit a little museum set up for my mom’s favorite novelist Dorothy Canfield Fisher, a writer whom my mom called her “third parent.” While we were sitting in the car outside the museum, I watched my mom speed-reading through a DCF novel and said, “Reading is for adults what playing is for children. All my life, I always wanted to learn how to read.” As soon as we got home, my mom, who was an expert in reading psychology, made a handmade reading primer out of a Bronx Zoo illustrated engagement book and taught me to read at a very young age. 

Bernice’s  Ninety-One Year Journey through Life

I took some digital pictures from family photo albums and had a few more online. I have some more great black-and-white images back in Boulder and in the future I should be able to get these photos scanned and get slightly higher image quality. There are some big gaps in her life where there are few, if any, photos, but these will give some idea of her 91-year journey.

 

When they were dating, and continuing for the rest of their active lives, my parents had family memberships at the major New York museums and we went to them on an almost weekly basis.

Nathan was an artist—see Nocturnal Images–the Paintings of Nathan Zap

Bernice with her sister Jackie at the Cloisters

For an example of one of the profound things my dad said when he had dementia see:

No Safe Walk Through Life 

 

Photos of Bernice in an orange sweat shirt I took  in 2007 when she was 85

Bernice was a beloved mentor to a great many friends, family and colleagues. Much of this was done in person, but a lot of it was conducted in voluminous correspondence. Bernice was an amazingly  avid and prolific letter writer. Her letters were eloquent and filled with wisdom. Around the same time that the photos of Bernice in the orange sweatshirt were taken, I received a letter from her praising a film I recommended that she watch with Nathan, As Good as  it Gets. In the letter she riffs on different ways of interpreting the movie’s title. I took her words and made them into one of the 664 cards of the Zap Oracle—a free online oracle I created. (As Good As it Gets <<<the Zap Oracle card based on her letter)  Here is what Bernice wrote in her letter:

“The title intrigues me — I’ve been using it a lot, with different interpretations, depending on my mood:

As Good As It Gets — ‘Count your blessings.’ We’re lucky — nothing to complain about.

As Good As It Gets — (or can get — It won’t get any better — probably will gradually get worse)

As Good As It Gets — Don’t try to change or improve things. It can’t be done — Accept it.

As Good As It Gets — It’s the best time to make the effort to correct mistakes and take positive steps. Don’t wait for a better time to start.”

Photos I took a few weeks before her 90th birthday in her home in the Bronx, NY. At the time she was telling stories from her 44-year career as a psychologist and pointing out reasons she became disillusioned with the profession (and she retired before the worst of the overmedication era of which she is extremely critical—as we all should be).

The last photo, taken about a week before her stroke in March of 2015. You can see how alert and strong willed Bernice still was at 91. She is in her house with her neighbor Alex, a young chess champion.

Final Days, Updates on Bernice’s Condition

(Written during the days after her stroke for close friends and family and those interested in how to care for a loved one going through the dying process)

3/12/15 6:15am By my mom’s bedside at the stroke unit. She seems to be resting much more peacefully now with all the tubes and so forth removed. They are only giving her morphine which I think is helping. I set up a blue tooth speaker playing Greensleeves, https://www.youtube.com/watch?v=wnyYHZo9ghQ a favorite tune for her, and Beethoven’s moonlight sonata https://www.youtube.com/watch?v=isPCmF7hoeo a one hour orchestral version that repeats the slower, more “moonlight” part ten times. The right hemisphere, her intact hemisphere, is the one that comprehends music. In recent years she’s complained that classical piano recordings sounded like they were being played at the wrong pitch, too fast, and she realized that the problem was with her, that her brain had slowed down so it made it appear that the music was faster than it was supposed to be, so I’m hoping that this slower part will sound more appropriate. She was particularly good at playing the Moonlight Sonata, and played it more often than anything else I can think of. If anybody has any music suggestions, music that she was already very familiar with, please let me know.

I also put up a large framed photo of my mom in her wedding dress, and another photo of my dad which have already had the intended effect of allowing her caregivers to see her as she was, rather than as another elderly, vegetative stroke patient.

I feel better because she is resting so much more peacefully now and I feel her release isn’t that far away… and that she will be ready to travel through the moonlight of partial, intermittent awareness toward the next phase of her journey….

8am Some moments of wakefulness occurred. I didn’t notice any yesterday when the swelling was probably at its peak. A couple of times she put her hands to her face and touched her lips. She had been complaining verbally about dry lips last week before the stroke. I spoke to the nurse who applied moisturizers and she was able to communicate with the nurse. When the nurse asked if she was in pain she clearly nodded no. When the nurse asked her to blink twice if she wanted her partial dentures out, she blinked twice. So far they haven’t been able to figure out how to get them out and don’t want to risk injury.

I came over and announced myself and she opened here eyes long enough to verify it was me, seemed to smile approvingly and took my hand. So there appears to be a tradeoff with the morphine. She was sleeping more comfortably when I first came in which would have been closer to the peak of her every four-hour dose. The moments of wakefulness came 45 minutes before she was due to get another dose, but leading up to that she seemed more agitated and uncomfortable. After the dose she just had she is sleeping much more comfortably again. So I’m thinking that family members, one at a time, might try to get her to be aware of their presence 45 minutes before the next four-hour dose. Apparently there isn’t a single morphine pump available in the hospital. Also, a bed has not yet opened up in palliative care, which would be the best place for her, but the care in the stroke unit seems top notch.

Jenifer, Lon and Robert got a horrible impression of the emergency roomwhich didn’t even diagnose her as having had a stroke for many hours. I walked through the ER this morning and it is a nightmarish place, looking identical to the basement hospital scenes in the movie, Jacob’s Ladder. Jenifer and I had both been working to get her transferred to Mount Sinai. But when I came in yesterday morning I was pleasantly surprised to see the exemplary care of the stroke unit. When the team of professors and students came in on their rounds I was impressed with the two professors, especially Dr. Labovic who spoke to us for over an hour yesterday, fully acknowledging the unjustifiable mistakes of the ER and discussing her case thoughtfully and even soulfully. He taught formerly at NYU and Columbia Med schools before he was recruited by the Albert Einstein medical school associated with Montefiore and impressed me as one of the most impeccable physicians I’ve ever met.

Apparently the neglect of the ER probably didn’t have much of an effect. Even if they were aware of the stroke, and even if she were still in the golden three-hour window after her stroke, due to her surgery of last week she wouldn’t have qualified for the clot-busting drugs. Also the stroke is not the sort that would have been caused by her fall from the bed. The stroke was the cause of the fall, not visa versa. The second degree burn from the lamp falling on her leg is pain she was probably not conscious of according to Dr. Labovic. She was not able to press the button of the lifeline medical alert pendant she was wearing even though she still can control her left arm. If she did experience pain, she would not remember it as her brain was not in a state in which it would be able to create memories.

Dr. Labovic supported the move to palliative care only as did my mom’s two main doctors at Mount Sinai—Dr. Oliveri her gerontologist, and Dr. McGloclin her cardiologist. We had all heard her say repeatedly that she would not like to be kept alive in a highly disabled state. No meaningful quality of life recovery from such a massive stroke in the left hemisphere seems likely. She would be paralyzed on her right side and unable to communicate. She does appear, in the few observed moments of wakefulness, to still be able to comprehend language. She seems much more peaceful without all the tubes and intrusive procedures and yesterday Jennifer noticed that her breathing and demeanor seemed more peaceful when we were discussing the palliative only care option.

Several times prior to her last surgery she mentioned to me a specific anxiety based on an earlier surgery in which she awakened from general anesthetic and felt paralyzed and unable to communicate. We discussed this specific anxiety with her anesthesiologist just last week. Based on that, I think all efforts at prolongation go against her wishes and comfort as waking up in the only ways allowed by her present condition would be very close to what she experienced coming out of the anesthesia and not being able to communicate.

Presently she is sleeping very comfortably.

I feel blessed that I was with her during the last conscious week of her life. She was happy and alert throughout. Her recent hernia surgery went very well, she was optimistic before, conscious during, and very pleased with the outcome which she felt brought immediate relief. It’s possible that the fluctuations in her blood thinning medicines might have contributed to the stroke.

To put things in a positive perspective, any of us would be fortunate to make it to 91 with all our faculties and be able to live independently right up to the end. I spent a good part of the week reading to her from my fantasy epic, Parallel Journeys, and she caught a number of grammatical problems I had missed, still the brilliant woman we all knew her to be.

Currently we plan to bring her home for hospice care on Saturday. Bernadette just arrived from England where she was going to grad school.

3/13/15 at 12:50 pm EST

Sorry for the delay in updating. There is a need for massive multi-tasking and non stop activity as we try to work out home hospice care for my mom and numerous other details which makes it hard for me to slow down to experience the poignant emotions in the background. All of you deserve more timely updates, but it is the continual quandary of what to do next and I have to prioritize the things most in accord with my mom’s wishes. Fortunately Bernadette is here to focus on the quiet presence part with my mom and she reports some meaningful communication with her last night. More about that in a moment.

But first, speaking of my mom’s wishes, this morning I found a living will written in her handwriting which states: “If I become terminally ill, or if I am in a coma or unconscious, with no hope of recovery.

If I have brain damage or a brain disease that makes me unable to recognize people OR to speak, and there is no hope that my condition will improve I do not want:

Artificial respiration

Artificial nutrition and hydration

CPR

Dialysis

Blood transfusions

Any drug not solely for my comfort.

Her wishes are completely unambiguous and it’s a good reminder for all of us, regardless of age or health, to make similarly clear statements of our preferences.

Bernice is presently sleeping very peacefully.

Bernadette, who stayed over night, reports some meaningful communication with her last night. She noted a smile on one side of her face and some nods at appropriate moments. For example, Bernadette asked her if she wanted a piece of music repeated and she nodded her head. She also opened her eyes and looked at Bernadette and seemed aware of who she was. She both smiled and nodded when Bernadette talked about bringing her home, so that is the main priority right now.

10pm EST 3/13  Everything has been arranged for my mom to come home from the hospital to 24 hour home hospice care tomorrow morning. Despite the morphine there were numerous moments of wakefulness with smiling when talk of coming home was mentioned. She shakes her head no when we ask her if she is in pain.  Rhonda and Jennifer are staying with her overnight in the hospital and I am back at the house getting things ready. Oxygen was delivered a few minutes ago and we are living in the 24/7 world of round-the-clock services for the critically ill. It was a very hectic, multi-tasking day and I apologize for not being able to call people, but there was so much to do.

We are all feeling very good about Bernice being able to come home, which is in accord with her long-known wishes and we are using the same hospice service she arranged for my dad’s home hospice care in 2012. Thanks for checking this page and thinking of Bernice.

3/14/15 8:20 AM  Bernice is home!  According to Rhonda and Jennifer, she was wide wake and her eyes were open and I saw her eyes open and  aware as she came out of the ambulance. Prior to discharge they took her off the morphine pump and she became more wakeful, smiling when Jenifer and Rhonda told her she was going home. We have her on supplemental oxygen and a morphine patch and are awaiting the arrival of the hospice nurses.

2pm

Bernice had a series of pleasant dreams about the afterlife about two weeks ago.  The circumstances of hearing about the dream were very synchronistic.  A friend of mine was driving me to Tucson where I was going to do research for my fantasy epic, Parallel Journeys, which has portions that take place in Tucson and in nearby Oracle, Arizona the location of Biosphere 2, the setting for another major part of the book. I was reading aloud to him from Parallel Journeys, a part where a dingy apartment in the lower astral plane (an afterlife plane) is described. The reading was interrupted by a call from Bernice. Her doctors had unexpectedly decided to do the hernia surgery they had been considering much sooner than expected and she asked if I could come to the Bronx during that time. I told her I would arrange the flight as soon as we got to Tucson and wifi access.

Bernice was optimistic about the surgery, but also wanted to discuss a series of dreams she had that she believes were about the afterlife. In the one that she could remember the most distinctly, she is being given a tour of a beautiful facility, with wonderful architecture. There were colors she hadn’t seen before, and there was also a lovely apartment that was being provided for her. She had a young male companion with her who was concerned about the cost of staying at the facility. Bernice is explaining to him that there is no money where they are and that everything is provided for free.

Again, she interpreted the dream herself as about the afterlife.  Near-death experiencers (I’ve researched this topic for many years and it is a major section of my non-fiction book)  commonly  report being in beautiful environments where they see colors they haven’t seen before.  Some also report awareness of a free abundance of  beautiful things, and that thought or intention (rather than money) is sufficient to manifest desired objects. The timing of her dream report to coincide exactly with my reading a portion that describes an apartment in a darker afterlife region seems highly synchronistic.

Currently Bernice is resting very comfortably. A skillful RN from the visiting nurse service processed her official admission to home hospice care, ordered medicines and supplies and trained us in a few procedures.

6pm 3/14/15

Bernice is resting very comfortably. Things are starting to slow down and feel calmer now that she is home and has 24-hour nursing.  Bernadette and Rhonda have also been attending to their grandmother constantly and seem able to empathically tune into her really well.  A high point of the day was a visit by Bernice’s beloved neighbor, Velma, who is also a highly skilled nurse. She gave Bernice a massage all along the left side of her body which still has movement and sensation and she seemed to really enjoy that. It was also great to get Velma’s calm perception of the whole situation which looked just right to her. We have a large humidifier set up next to her and that seems to have significantly improved her breathing. We also set up a small speaker system at the head of her bed and we’re playing some of her favorite slow-tempo classical music, some of it recommended by Alexis, Debussy at the moment.

In general, it feels like it is best for her, and for those of us around her who are generating the emotional atmosphere surrounding her, to slow down and generate  more calm and acceptance to help facilitate the graceful exit we all want for her.

Please leave any comments below. If you commented on Facebook, please copy and paste those here as this will be a permanent tribute page.

3/15/15 9:15AM  Bernice continues to rest comfortably. Bernadette observed 30 seconds to a minute of her eyes open at about 3:30 AM. Presently she seems to be aware but too weak to respond much. Several times just now when the nurse asked her to open her mouth so she could give her a teaspoon of water she did, but that was as much of a response as we got. She was able to swallow the few teaspoons of water.

Bernice has not shown any signs of agitation or discomfort in quite a while and though her care package of medicines arrived last night, including morphine drops, no one has seen any need to administer those and we plan to be highly conservative with them so as not to discourage wakefulness. Bernadette has been the one most consistently by her bedside learning from the nurses how to care for her, touching her and playing music for her, much of it suggestions from Leslie and Alexis.

Something to feel good about is that the emotional atmosphere around her has improved greatly with most of us becoming more accepting of her condition and her home filled with more life, more close family getting along well than have been here in many years. All the hospice workers have been very empathic, as they were with my dad, and I feel Bernice is getting exactly the sort of care that she wished for.

11:25 AM The most clear and unambiguous communication with Bernice that I have directly experienced from her in a few days. I asked her if she remembered the dreams she had about the afterlife and there was a very distinct and precise and perfectly timed nod and smile.  I got the same response, very precise and perfectly timed, when I asked her if she was feeling OK. When I told her (because I knew it already accorded with her beliefs of the last few years) that I thought she was about to begin a much happier new life phase when she was released from her body and again, perfectly timed, the precise nod and smile from the left side of her face. I felt a state of acceptance and spiritual awareness in her. I told her it was OK for her to let go anytime she felt ready. When we asked other questions like if she wanted morphine, or little bit of pureed food, there was no response.

1PM The health aide suggested trying a little puree and I called the nurse at the Visiting Nurse Service and she said that was a good idea, that it wouldn’t prolong anything but might be “comfort eating.”  Bernice, with encouragement, did make successful efforts to chew and swallow. I’ve started reading to her, speaking close to her ear (she had a major hearing deficit even before the stroke) from her favorite novelist, Dorothy Canfield, the woman she called “her third parent.” I felt there was a bit of a smile and a look of contentment when I started. She always liked me to read to her from Dorothy Canfield in the past and on a number of birthdays I recorded on cassette tapes unabridged recordings of all the major Dorothy Canfield novels which she listened to again and again. Although it could seem like having someone read to her close to her ear might disturb rest, in her case I don’t think so.  For most of her adult life she would go to sleep with news or talk radio on loud right next to her. If you ever want to channel Bernice’s highest values or feel in touch with her I recommend reading a Dorothy Canfield novel. Her best novel is The Deepening Stream and Seasoned Timber and Bonfire are two of the other great ones.  We have some extra copies of some of them, so if anyone wants to borrow or keep a copy that’s possible.

Shirley called earlier and we put the phone to her ear. If anyone else would like to do that we’ve seen numerous signs that she still comprehends speech.

3:12 PM A couple of  completely unambiguously  communications from Bernice in the last hour.  Robert, Erika and their two kids came over followed by Velma.  I asked Robert if there was anything of nostalgic value in the house he wanted that would remind him of Bernice. He couldn’t think of anything and I said, “She was never very identified with any object except her piano.  Do you have any room for a piano?”  Robert was interested, and talked about getting Emily piano lessons. It turns out that Robert has a friend who has been working for Steinway for many years. I went around to Bernice’s good side and spoke in her ear that if she didn’t get better I was going to give the piano to Robert. A very sharp, very distinct smile. Responses take a lot of energy and her various more random movements and self-adjusting gestures never include such a sharp spike of smiling. When I added that Robert would get Emily piano lessons there was again that very sharp, distinct smile.  Later Velma  told her that Alex just won a hundred dollars at a chess competition and said he wanted to donate it to Bernice’s medical expenses (which she doesn’t need of course) and again that very distinct and unmistakable smile.

8:40 AM 3/16/15 Nothing much new to report except that Bernice has been sleeping very comfortably. Last night Bernadette witnessed something very notable. She and the nurse’s aide were trying to give her spoonfuls of apple sauce and she accepted one, but clearly made a sound closely resembling “no” when a second spoonful was offered. This seems consistent with something Bernice told me just a few days before the stroke. Nathan, who always had such a robust appetite would accept only a spoonful of ice cream or water near the end.

5:45 PM Great visits from Leslie, Jim and a little after they left, Sheldon.  Leslie and Jim played a Bach violin duet. Bernice’s most wakeful moment of the day came between these visits when she opened her eyes and seemed aware of the overall situation but I can’t say that she was able to focus on any one of us. We asked if she was in pain and got a clear shake of her head to indicate no. We asked her if she would like us to play music for her and got a vigorous shake no, so we’ve discontinued that.

3/17/15 545 AM  Bernice was sleeping very comfortably when I came downstairs early this morning and according to the hospice aide had an uneventful night. At about 530 AM she opened her eyes and kept them open for a minute or so and did this two or three times. There was no sense of recognition or reaching out, however. What I feel is that since the smile she gave on Sunday when I told her that I was going to give her piano to Robert, she has been in an inward place and no longer socially motivated. She is still capable of understanding and responding—opening her mouth when asked to, shaking her head no to music, the “no” like word about the applesauce, but the refusal of inputs is the extent of her outward communication.

I feel it is probably best not to make demands on her attention at this point and to allow this inward movement without interference. Her process should be allowed to unfold in its own way and yesterday evening I felt myself getting exasperated a bit with understandable attempts by some with good intentions to interpret that process in ways they think might comfort bereaved family but are actually an interposing of sentimental fantasy that interferes with our actually being present with Bernice. All the health aides, and I suppose they are trained to say this, keep saying again and again and again, “She hears and understands everything you say!” even when she seems to be deeply, deeply asleep. I lost patience with this last night and replied, “I think we should speak when we are around her as if that were true, but I see no reason to be sure that is the case.  I was with her the week before the stroke and she was so hard of hearing I usually had to repeat myself two and even three times in a LOUD voice before being understood. So unless having a stroke gives you improved powers of hearing, I don’t see any reason to believe that she is hearing and comprehending words spoken at a distance and volume she wouldn’t have understood before the stroke.”

I feel that it is better for Bernice that we not impose our emotional needs and wish fulfillment thinking on her process, but respect the way it naturally unfolds, and go with where she is at, not where we are or where we want her to be. I am not lecturing anyone here, but actually just thinking aloud as I readjust my stance to her and presently feel that it is best to create a loving and comfortable space around her without intruding into her inwardly turning phase.

7AM

I am also not sure that it is appropriate to speak to her in a LOUD, smiley-face, happy voice as if she were a cute, new-born baby opening her eyes and wanting the approval of an unknown health aide. I want to check with other family members before intervening because this is how I feel, but I would prefer consensus from other immediate family before requesting that the hospice workers  stop doing that. I also want to emphasize that these hospice workers are lovely, well-meaning people who have a lot more experience than me, but not more experience with my mom and her wishes. Whenever people attempted to condescend to Bernice because she was elderly she let them know in unmistakable ways that their manner was not appreciated and that she was a lot smarter than they were and that her age and abilities made her feel more justified in being condescending to them if necessary.

Also, the feeling I get from her is a somber, dignified feeling of someone aware on whatever level that she is dying. I don’t think her mood is that of a toddler excitedly taking her first steps and enjoying the encouraging praise of strangers.  Similarly, the music that I felt was most appropriate, when music felt appropriate (before she signaled that she had enough) was the moonlight sonata and not something upbeat.

I also found myself annoyed with some functionary from Mount Sinai who called yesterday, someone who never met my mom and seemed to have no grasp of her condition, but insisted on the sort of loud, upbeat tone you might expect of a local news anchor narrating a sentimental human interest story in the last three-minute, feel-good segment of the 6 o’clock news.  She attempted to close this highly inauthentic phone call with a glib and emphatic, “I’m sure she will get better!” I was attempting to be patient with the phonyness, but that was too much and I felt I had to say something, “Why do you say that? She’s not expected to recover and we are not aiming at recovery but at final comfort.”  She seemed discombobulated for a moment because I had deviated from the expected script. “Well, we try to stay positive!” she replied.

The positivity approach has its uses, but has become for many an absolutist one-size-fits-all attitude toward everything. It may be an appropriate tone in the locker room before a big game, but not at someone’s death bed.  I haven’t read it, but Barbara Ehrenreich published a book about this in 2010, Bright-Sided How Positive Thinking is Undermining America.

What I also find disrespectful is that with good intentions some hospice workers attempt to portray the dying person, especially I guess if she is a grandmother, as though she were an unresponsive, but warm and fuzzy care bear full of love and awareness for everyone around her. “She hears and understands every world you say and loves all you very much!”

We really don’t know what the ever-changing state of awareness is of a 91-year-old woman with a massive stroke in the left-hemisphere side of her brain. It is also quite likely that she has additional, undetected strokes in the last few days. Her state of consciousness is likely to be one that we cannot easily imagine.

Last night I showed everyone the amazing Ted Talk by brain scientist Jill Taylor who had a massive left-hemisphere aneurism when she was 37.  Everyone should watch it.  I read her book, My Stroke of Insight, and ordered a copy for Bernice who also read it with great interest. I hope she is able to retain some memory of it—Dr. Labowitz, the head of the stroke unit, said that she would likely retain her memory—because it might help Bernice to understand her condition.

8 AM Bernice’s sister Jackie responded to the latest updates:

Just realize that sometimes peace and quiet are the most helpful, and
appreciated, "gifts." We like to feel we are doing EVERYTHING, but need to
step back, as you are doing now, relax, take a deep breath.... God does
things in his own time. Love, Aunt Jackie

12:10PM  I replaced the evening health aide who both Bernadette and I found sleeping on the job. The day shift worker also noticed that she had neglected to do a number of things.

About an hour ago Bernice became wakeful with an extended time of opening her eyes. Both Bernadette and I had similar reactions  to this state of wakefulness. Bernice is no longer responding to communications or questions as she did a couple of days ago and Bernadette (who has spent the most time by far at her bedside of anyone) also agrees that she has entered an inward turning and not socially responsive phase. We both held her hand and it seemed possible that she reached for our hands at different moments. We both feel that wakefulness is no longer very pleasant for Bernice and creates a state of anxious confusion that doesn’t have value for her. Her rate of breathing increased significantly, for example, during the wakeful minutes.  Joan, the same hospice social worker who worked with my dad agreed with our observations and conclusion that more sedation is now appropriate so we had the health aide give her a morphine dose to help her relax and sleep.  Joan also suggested that we begin administering the anti-anxiety medication in our comfort pack and I got authorization for that from the VNS nurse who suggested making that an ongoing part of her care. This medication seems especially warranted because an anti-anxiety medication Bernice had been taking for several years for her heart condition had become a clear dependency and she and others close to her noticed that she would get extremely agitated if she was late taking that. So, overall, (assuming Jenifer approves—she’s sleeping right now and we’re reluctant to wake her) the consensus is that we’re in a phase where more sedation seems in accord with the preferences in my mom’s living will.

8:15PM Nothing much new to report. Bernice is resting very peacefully. Increasing the sedation is clearly helping.  Wakefulness at this point seems to only produce agitation and anxiety with more rapid breathing and doesn’t appear to have any value for her. There has been a somewhat more somber mood today as the reality that meaningful interaction with Bernice is now in the past and the time has come to cherish memories and the life she has lived. I spent a good part of this evening taking digital photos of photographs of Bernice from family albums and depending on how things go tomorrow I expect to load many wonderful images onto this page.  A hospice worker who just left told me that, based on her experience, she felt Bernice’s release is very close.

3/18/15 9AM EST Not much new to report. Bernice is resting comfortably and slept peacefully through the night. What’s new is an extensive album of photos of Bernice entitled: “Bernice’s 91-year Journey through Life.” Scroll up to see it and help celebrate her rich and fulfilling life.

2:15 PM Bernice appears to be deeply asleep and her breathing is irregular with long pauses. We put her on oxygen and are expecting a visit soon from the RN to check on her,.

3:15 All the classic signs of extreme imminence

6:45 PM All her children and grandchildren gathered around her bed. Velma, her neighbor is here also. But Bernice is in no hurry, she seems to be peacefully asleep and it is great that we can all be with her for her final moments. There is a double stress for the Klein/Fishman side of the family, Harold Fishman, Jackie’s husband, Bernice’s brother-in-law has been hospitalized but is expected to be able to go home in 48 hours.f her

3/19/15  4:55  AM Bernice is still with us which has even the very experienced hospice worker amazed, especially since she is breathing on her own and without oxygen.  She has had all the signs I saw with my dad when the end was an hour away for about twelve hours now. I’m not all that surprised because I know from long experience how tough Bernice is and determined to do things in her own way and at her own sweet time. For example, there were two separate instances in the late sixties/early seventies when the Bronx was in its worst phase where, on the first part of her commute to where she worked in Englewood, New Jersey,  the windshield of her car was struck by actual bullets. She kept right on going determined to get to her meeting on time. She was always the consummate professional at work, but underneath that she was also a tenacious fighter. When a mugger grabbed her briefcase filled with piano scores when she was on her way to a piano lesson she ran after him into Saint James park and yelled at him: “Give me back my music!”  Death may be waiting for her, but she is going to keep him waiting until she is good and ready.

3/19/15 530 AM At the exact moment I hit “update” on her page to post the above entry, the hospice worker came to me and said her breathing is slowing. Yesterday we discussed right next to my mom how to contact Carol, the day shift hospice worker in case she didn’t have to come in.  Carol told us repeatedly that 5AM was the best time to call her to catch her before she left her home for the subway. Bernice breathed her last breath at exactly 5AM. This seems so characteristic of her, able to hold on long enough for the family to reassemble and punctual to the minute to make sure she didn’t inconvenience anyone else.  More about that in a moment, but on a practical note we are planning on a Friday service at New Montefiore Cemetery  and given the approach of the sabbath that is likely to be in the morning. If this is inconvenient for anyone, please don’t feel you have to break other commitments or responsibilities to attend. Like this page, which floats in cyberspace and can be accessed anywhere, Bernice is now similarly nonlocal and you will be just as able to contact her spirit from anywhere and as we saw with the 5AM Carol moment, it seems consistent with her personality and wishes not to inconvenience anyone on her behalf. Thank you to everyone for your support and for continuing to keep Bernice in your hearts and minds where all who knew her will cherish her forever.

I didn’t want to mention this before, but when Bernice called me to tell me that her surgery had been rescheduled and that she had been having a series of dreams about the afterlife (see the status update dated 3/14/15 which is much further down this page), she also told me that the day of her surgery was March fourth and at the time I was struck by an eerie sense of the potential symbolism of that date because March Fourth is a also a kind of pun with March Forth! ( I was particularly struck by this correspondence because a few years ago I wrote something entitled March Forth! which could be title of the extraordinary image I discovered  and photographed the morning after my dad’s funeral (see below). For more on how this uncanny optical effect appeared please go to Nathan’s memorial page.   I feel that Bernice’s unconscious at least was aware that this was the time to March Forth! and it was clearly indicated by her dreams. A couple of strange details have also been puzzling us about the day she had her stroke. The day she came home form Mount Sinai following the surgery—and once again she was as sharp as ever and in good spirits—I physically put her Lifeline Medic Alert Pendant on her. She was well aware of the importance of keeping it on even while bathing. When she was found, however, the pendant was not on her and also the door to her bedroom was locked which was not her custom. It was as if she were trying to ensure that no one interfered with the opportunity to March Forth!