Home Hospice Chronicle

My mother lived in my home for 19 days before she died. That experience was so unlike any other moment in life.

DAY 1

She thinks she’s here to recover and gain strength.

We all know that her heart doesn’t stand a chance. We hope, even though deep down, we know. She does not have a clear-cut prognosis, having suffered a rare bacterial heart infection — so rare that her doctors, the Cleveland Clinic or Mayo Clinic had never seen it before. It is this uncertainty that gives us a sliver of hope.

Gearing up with soft foods, which they call a “mechanical diet.” Yogurt, ice cream, protein shakes, blueberry smoothies, scrambled eggs and rice pudding, not to mention breakfasts, lunches, dinners and snacks for Evette, Tema’s wonderful aide. My sister Jane found out from our friend who referred her that she loves Honey Bunches of Oats. Jane brings two big boxes.

I am ordering supplies and opening packages non-stop — extra sheets, bedding, towels, paper goods, microwave, seltzer, Ensure, kitchen supplies. I have transformed my basement into a studio apartment with a kitchenette. I always wanted a Simply Human trash can, and now own one. They really are better.

We want Tema to shake off the hospital deliria. The only goal is for her to sleep and relax. Nothing taxing. No attempts at movement. She sleeps fitfully, calling for Ira. We know there was a childhood friend named Ira but we don’t know much about him. Our Rosebud.

DAY 2

She wants to feed herself, not be fed, but she can’t quite get the spoon to the mouth.

I prepare little toasts with almond butter, french toast cut into quarters, tiny pancakes, chicken nuggets, fish sticks and mini pumpkin muffins — anything she can hold. She refuses them all.

She chats sporadically with Evette, who watches MSNBC on very low volume all day.

She endures visits from her kids, but she isn’t happy. She drinks some water and some protein shake but not much. She’s in a semi-sleep and calls for Ira most of the day.

DAY 3

We try even more foods. She drinks a bit. She sleeps more.

I tell her about how much I loved watching her favorite movie with her — Bells of Saint Mary. My sister thought Carousel which of course is preposterous — it was Bells of St. Mary with Ingrid Bergman and Bing Crosby. We talk all about it. Which means I talk and she mostly sleeps. She calls me Mary five times and goes back to sleep.

I wonder — if she were in a facility, she’d be having the same experience, and I’d get the call one night at 3:00am that she’s gone. She’d have been flailing and moaning with her brows furrowed and eyes rolled back into her head for hours upon hours in the facility, just like she is here. But I wouldn’t have seen it, or even known it.

I feel like Annie Sullivan, one of my heroes, helping a severely disabled person with every need. Only with Annie Sullivan, the prize was “water.” My prize will be death.

DAY 4

She’s more agitated.

A social worker comes who’s a total idiot. This is a self-absorbed woman literally on her deathbed who doesn’t give one shit that he’s a twin, yet this is what he’s discussing with her. He asks if she has any questions or fears about this stage of her life. I see her face visibly turn stone cold. She was not considering death, yet the words “hospice” and “comfort” are all around. This moron twin social worker is announcing that death is coming and she wants none of it.

This hospice-at-home business is not all it’s cracked up to be. It’s round the clock meds. It’s not knowing if the meds are working. It’s constantly googling if this eye movement or breathing pattern is the “active dying stage,” it’s becoming an expert on Cheyenne-Stokes end-of-life breathing patterns, it’s being able to administer 5mg of morphine every three hours, then a little more, then a little more frequently. It’s wanting to but being terrified of googling “how much morphine can kill someone.”

Add to all of that the element that she doesn’t really know — or want to know, or want us to know that she knows — that she’s dying. I don’t want to lose my mother. But if she has to go, I will accept that reality later, after. The only thing I want now — my sole purpose in every decision — is to help her find peace.

DAY 5

Tema can barely speak. But we know her lifeline is keeping in touch with her sister and several friends. We call Joan, her sister, her other half, who at 88 just beat Covid. Joan isn’t great at doing the talking without asking questions. It makes her aware that this is harder than she thought. Joan, out of the four siblings, will soon be the last man standing from that generation. Another horrific detail of this that I’m now managing daily.

Tema asks for ice cream on a stick — which I give — and she takes an enormous bite. She says “put it away Ira.” OMG!!

DAY 6

More ice cream on a stick, only now I feed it to her with a spoon, and she doesn’t fight it as much. But she only gets a few bites.

Talks (listens) to Nora, Stan and Ellen on the phone. Nora, her childhood BFF, is wonderful — tells her about all of their secrets and how they’re going to talk about all of them “when the weather is better.” Love that. Stan, her therapist, tells her it’s wonderful to hear her voice on the last night of Hanukkah. But the Ellen call is the best of all — her last good call — Tema says “I love you sweetheart,” to a sobbing Ellen, Tema’s adored niece.

Nora gives us the dirt on Ira — a childhood crush. He went to Princeton where he had a nervous breakdown, dropped out and then moved to Connecticut — and that was the last we heard of Ira. Amazing how Tema has not mentioned my dad once during this illness except once in the hospital, calling him Steven. The father of her three children, they were together for 24 years. His name was Skip.

DAY 7

No one is sure exactly when, or exactly why, she transitioned into someone who came home to rest and get stronger into someone who came home to decline and die. Her body is changing in new and alarming ways. Not only can she not see, her eyes are moving in two different directions. Her arms thrash about involuntarily. One side of her body is much more swollen than the other. We’re constantly shifting her position (very challenging). I believe she’s had further strokes and has brain damage.

I know she can hear. I play her the duets that Meredith, my extraordinary cantor and her wife Leora, have sung. They are breathtakingly beautiful; Tema so loved hearing them sing together on countless occasions. I posted in our synagogue’s FB group asking for links — and received not only links, but an outpouring of love and support. It was cathartic for me — I so needed some friendship. It’s so lonely — this odd-and-all-hour hospice during covid. Most days I only even get out of the house just to check the mail. Some wonderful women sent me beautiful flowers. I vow to be more social and more involved with these people next year.

Jane comes every day to visit and sit with her. She brings lunches for Evette and whatever else we need. I ask her to bring more Honey Bunches of Oats. We can’t believe we’re on our third box. No one can believe.

DAY 8

The last bite of food. The vanilla ice cream just sat on her tongue.

I feed her water from a syringe, calling her my baby bird — like I did when my daughter knocked her teeth out as a toddler.

Tema calls for mama. Her mother Ida, for whom I am named, died when she was a teenager, after a long illness. The letters Ida wrote to Tema at camp were repetitive — “Tema Darling, It’s beastly hot in the city. All is ok here, T.G. I am hoping to visit you soon, but not sure if I’ll be able to. I love you darling, and miss your silly puss. Be well, have fun. I love you and miss you. Kiss Kenny for me.” I read them to Tema now, imagining her then, imagining what Ida’s voice might have sounded like. I sometimes revise the letters as I read them, telling Tema that mama is so proud of her for being such a loving daughter and wonderful person. I read her father’s letters to her but I delete the nasty parts where he yells at her for calling him which costs $4.00 vs. writing him which costs four cents. I’m Marty McFly now interfering in my mother’s childhood. I only want her to have an easy, peaceful transition.

Her oxygen is so low I can’t believe she’s alive. I know there’s brain damage. I see her like a little girl — how I now miss those crazy dementia days of her hospitalization when she was reliving her Brooklyn childhood, calling out to her cousins Tema (“we fought a lot at camp”), Riley and Butch, who was “so sick at the same time the other little girl was sick.” She told me how she tried to “hold Butch in her hands but there was also Martin and it was too much to hold Butch and Martin.” I later found out that Butch, who my whole life was just Butch, was actually named Martin.

Evette continues to watch MSNBC all day — I now watch with her and we discuss current events. We both love Joy Reid and we both find Rachel Maddow to be supersmart but a tad condescending. She tells me about her previous patient’s family, huge MAGA Trumpers, who, during the aftermath of the election, blamed black people for each state that turned blue. Evette tells me about her four kids and granddaughter. One of her sons is a semi-famous reggae musician and producer. We facetime her kids and I “meet” her adorable granddaughter.

DAY 9

Mostly asleep.

Evette, who’s been quarantined in my basement nine days so basically the safest person in America — is now coughing. (I ask her every day if she wants to go for a walk. “Too cold for this Jamaican girl,” she tells me.) She claims her cough is a tickle, but I now refer to her as Covette and make her wear a mask 24/7. Does the fun ever end around here?

I talk to Tema very slowly and quietly, telling her that we’re sad beyond belief but that we’re ok. That we’ve taken care of her apartment, her car, her doormen’s Christmas tips. I tell her I’m sorry for all the times she thought I didn’t call her back quickly (which was every day in the hospital — even though she didn’t have her phone, she felt we weren’t returning her calls. Very few visitors to hospital during Covid. She was so alone; another heartbreak.) I go on and on with “it’s ok to let go and we’re ok and be very proud of how much love you have in your life and rest easy with no worries” meditations. I feel like a performer, or writer, sharing my finest work with my best friend and keenest critic. The silence is deafening. I’ll never know if our efforts are helping her feel comfortable, or if my words help her let go or find peace. These people never report back to us down here in the field.

Reading all of these blogs — they sometimes hold on to see a certain person, or to finish some unresolved piece of business. How do these bloggers come to know this information? Did they survey these people after? This sounds like bullshit to me. They go when they go. (Though everyone now has a story of this one who was waiting for her grandson, and that one who held on until Jeopardy came on — statistically speaking, perhaps those events coincided?)

People tell me I’m doing a mitzvah and that this is sacred work. Nothing feels sacred. Was “sacred” a typo? Maybe they meant scared. I’m exhausted and scared, and I know that I’m not prepared for the event that’s going to occur any day. I get texts and calls from hundreds of friends and relatives; I know they’re preparing to lose their beloved Tema. I also know that I am not preparing or processing this at all.

DAY 10

She’s declining. She’s got that rattly, apnea breathing called Cheyenne-Stokes. So many fun new terms to learn. We increase the morphine.

She’s agitated — arms flailing — feeling like she’s falling. We manage the meds to make her less agitated.

She whispers “l’shabaich.” It’s the second word from one of the most important prayers, the aleinu, where we bow before God. She counts, slowly, methodically and very quietly. Fifty-five, fifty-six, fifty-seven. An hour later, seventy-one, seventy-two, seventy-three. I think I used to remember her doing that during airplane takeoffs and landings. Her meditation.

I sit beside her with my laptop, starting to outline, write and edit the anecdotes for her eulogy. I read her a few of the stories — as memories, not her eulogy.

Every day it’s a slightly different cocktail of meds, timing and dosages, and no doctor to tell you what’s really happening. I call her hospice nurse who visits twice a week. Seems there really is no ceiling for morphine or meds. I ask “ok if I increase it to every 3 hours?” She says, yes, fine. I ask for two hours. No problem. I get the feeling I could ask for every 10 minutes. No problem. After all, what’s the downside? What could go wrong? Hospice medicine is truly the easiest field of medicine. Who else has a 100% success rate? Even my dentist undoubtedly misses a few cavities.

DAY 11

Phlegm day. Stuck in her throat — she’s unable to swallow or spit. It’s just there. They give us a pill to put under her tongue to dry up secretions. It’s not easy getting it there.

I am kind of a mess — getting 4–5 hours of very-interrupted sleep. Managing meds for her, serving meals and snacks to her aide all day and night. Doing hundreds of dishes; did I mention that the dishwasher’s been broken for over a month? New one allegedly being delivered next week.

I wish I were the kind of person who could post “friends — can anyone drop off some soup” but that feels too hard. I’d have to tell someone what we like and don’t like and coordinate the timing, and return the pot. Easier to just not. My daughter and I walk around the block and she tells me about her 17 year old stepsister who has a painful nerve condition, and they are receiving meals from a meal train. Seems I’m quite a bit higher on the anguish scale, yet unable to ask for, or receive, help.

Out of Honey Bunches of Oats. This time Jane brings two enormous boxes thinking if we overdo it by a lot we’ll be so wrong, right? Funny.

DAY 12

Christmas

The phlegm pills help a bit. (Which also begs the question — how come when we have congestion we don’t know of these magic little pills?) Moving her position helps a bit.

She has not had food in a week. She now rejects the little squirts of water too. How is she alive?

I tell her —dozens of times, every day — that we all love her and are so proud of her and that her body needs to rest. It’s ok to let go. You will always, always be a part of us; we will always hear your voice inside of us. I tell her that we will be sad but that we will be ok. The first few times I gave this speech it was gut-wrenching. I now recite it on autoplay, adding different details each time in case there was one little thing that she was waiting to hear before letting go.

I make a little Christmas party for Evette in the living room. I give her cash and gifts. David found the last red stocking at CVS on which I pasted a giant “E” and hung above my fireplace, using the shamash from the menorah as a hook. A friend picked up fancy Christmas cookies. It was the first time Evette came upstairs.

Everyone in my family died on a holiday. My father died on the second night of Passover. My grandfather, Tema’s father, on New Year’s Eve. My grandmother, Tema’s mother-in-law, on Christmas. I would have bet my bottom dollar that Thanksgiving was it for us. Then again every day of Hanukkah. Then again for “sure sure” on Christmas. We’re now looking at New Year’s Eve. Anderson Cooper. We’re the Andersons. How on earth?

DAY 13

She has that “dramatic flurry of activity” that you read about in all of the hospice articles — this can mean that death is moments away. She opens her eyes crazy horror-movie wide. Her brow furrowed. Her jaw is clenched like Norma Desmond, but with those Linda Blair crazy eyes looking east and west. Her arms are flailing uncontrollably. She’s trying to scream but she’s so dry that she can’t. She grabs onto my two hands and practically throws me across her body. I hold on tight. I wish she could scream in fear and anger, but she can only flail about in this frightening way. Me, David and Evette all look at each other and think “this is it, right?” I think I hear “help me.” I don’t know if that means help me die or help me not die. This is torture.

During this episode I had to pee very badly. I asked David to take over the hand holding for one minute, which he did. Winner of all boyfriend awards. He also does the 3:00am meds. Could not be more grateful for him. Oh — and I’m sleeping in my daughter’s room so that our different med schedules don’t interrupt the other’s four hours of sleep. It’s fun around here.

DAY 14

Calmer today. Another episode, but just a mini-version of yesterday’s. I give her the daily mantra over and over. Jane sits by her side and holds her hand. She sleeps deeply.

The phlegm pills no longer work because her tongue and mouth are bone dry; they can’t dissolve. I now dissolve them in a drop of water, which takes about 5–6 minutes, then suck it into a syringe and give it to her that way. This means she’s getting a drop of hydration. Am I causing a slow-up of the process? No one knows.

Jane and I are sitting with her, cross legged on the floor near her hospital bed, laughing hysterically about her historically long goodbyes. We’re crying laughing about the Honey Bunches of Oats and that mom never knew how to cut the ties and let go — EVER. I tell Jane to pretend we’re crying, as if she’ll wake up and be mad at us for laughing, which causes further hysterics.

DAY 15

Today I was going to tell her more about the infection that’s killing her and how it’s her choice to find tranquility. I only want to help this poor, scared, little girl of an 80 year old woman find peace. The words rest in peace never meant a thing to me until now. Now it means everything. My brother is coming soon. I don’t want him to arouse or excite her but I know he needs his time to say what he needs to say too. Evette did the 3:00am meds for me because David was away — only to then call me at 3:17 because her breathing changed.

For someone who never moves, talks or does anything, Tema’s needs are endless, and constantly changing.

She never woke up today; I never told her about the infection.

DAY 16

No-carbs-for-me day. Good luck with that.

Hospice nurse came today. Said definitely this week.

Tema revived a drop for one minute, and I seized the moment to tell her about her heart infection and how she didn’t do anything wrong, nor did she deserve this. She ate right, walked every day, and was very social. This horrible disease came out of the blue and not because of anything she did wrong. I like to imagine that I saw her nod. I know she heard me. (Ok I feel like Haley Joel Osment saying “I see dead people” but it’s true. She heard.)

Hospice TV & Movie Ratings. Unlike normal ratings, hospice ratings are very particular, and can appear to be random. Zero syringes is the worst, five syringes is best.

Two For the Road — not sure what’s thinner: the plot or Audrey Hepburn. 2 syringes

Citizen Kane — mother loss on the plus side, egomaniac on the minus. 2.5 syringes

Enchantment — mother loss, a silly family coincidence, David Niven. 4 syringes

Joy Luck Club — stumbled onto (and had forgotten) the intense mother-daughter bonds, and the painful, harrowing stories. 5 syringes

Oliver Twist (1948) — mother loss, child abuse, nothing but pain in Victorian England. 4 syringes

Stepmom — overacting, but solid mother loss, and that ring on a string. 3.5 syringes

Mr. McGoo’s Christmas Carol — a perfect — perhaps brilliant — rendition, with a wacky and unnecessary Broadway opening number. 5 syringes

Fractured Fairy Tales — Edward Everett Horton can read me the phone book. 5 syringes

Schitt’s Creek — my normal go-to, didn’t work for hospice. Just off. 2.5 syringes

The Way We Were — totally fell for this, yet again. perfect diversion to keep me awake until midnight meds after 3 hours sleep the night before. 3.5 syringes. (Would’ve been 4 if Hubble stayed in his daughter’s life.)

Mary Tyler Moore — like an old friend.Thank you. 4 syringes

The Honeymooners — like her old friend. Huge thank you. 4.5 syringes

Rocky Horror Picture Show- trying to stay up for late meds, my daughter had never seen it but was told by her friends that it’s for late night only, so we tried it. It was awful. I went so many times but on TV it was ridiculous. 0 syringes

Everyone Loves Raymond — apparently except for one person. But it’s Tema’s all-time favorite, so I’ll stick with it. Maybe jump to a later season. 2 syringes, hoping for 3 in a later season.

DAY 17

We all think it’s today. 17 used to be my lucky number. Shit.

Sydney, who didn’t want to be in the “house when it happens” (cue Hamilton), is now here, but upstairs only. She doesn’t want to remember her adored Granny this way. She becomes my helper, making sure I get what I need to function. She’s amazing.

I showed David and Sydney the middle-of-the-night procedure if “it” happens — we have to walk the medical examiner around to the back of the condo unit, in the pitch black night, carrying the lantern which I left by the door, so that they can enter the back basement door with the stretcher. Lead the grim reaper into my home via lantern light, like a Dickens novel.

DAY 18

2020 has only two days left. Praying that we wrap this up this year. As it is the funeral and shiva will spill into 2021. She’s been textbook “final hours” for three days. It’s agony.

Packed up Tema’s Chico’s clothing collection (how many velour sweatsuits does one need?) for Evette to bring back to Brooklyn when it’s over. Where it all began. Which I thought, when I packed this morning, would be today. Now, not so much.

Now taking a new approach with Tema — rather than telling her it’s ok to let go, I’m now trying “you do it on your own time, no rush, take all the time you need.”

DAY 19

NYE, and the 44th anniversary of her father’s death. Please let’s have this be the perfectly horrific end to this godawful year. Please Tema.

She’s agitated. We tell her it’s time to let go. Jane facetimes with her kids. I facetime with Sydney — for Tema to hear their voices. Is that what she was waiting for? Jane and I look at each other — who else’s voice does she need to hear to let go? We both know — and as we say it, she calls me. Magic. Joan. Her sister, who knows her like no one else on earth. I usually don’t chat with Joan while next to Tema, but this time I do. I tell Joan we’re with her favorite person and could she please tell Tema how much she loves her? I know this is very hard for Joan. A moment passes. Silence. Then, like a Broadway star — “Tema DAARLING — I love you, I miss you; you know how we love to talk every day about everything, don’t you? I can’t tell you how much you are in my thoughts. I love you dear Tema darling.”

Thirty minutes later, our mother took her last breath.

The medical examiner comes. Time of death 4:40pm. They can’t wheel the stretcher around the back because the ground was too muddy from the rain. They carry her upstairs and out the front door. It is surreal. Jane and I stand in the driveway sobbing hysterically. We only want to wave goodbye until the car is out of sight, just like she waved goodbye to us, never stopping until she couldn’t see us anymore.