Hospice Calling
January 4, 2022
The first day I
arrive from Israel, L takes me to buy some kosher food. We bring it back to her house where I crash for a brief nap and then we head out to the
hospital. Eight days ago, when I was still in Israel, L video chatted with me when she was in Mom’s
hospital room, so I could see what Mom looked like.
Somewhere in
her hospital journey, someone took out her dentures. Mom, who is now 86, has had dentures as long as I can remember. There are a few pictures of her
in her 20s with her real teeth, but if I had to guess, I would say she has
worn a full set of dentures for at least 50 years.
The first time
seeing her without teeth is exceedingly jarring. I feel anxiety rumbling in my
belly as we take the hospital elevator to her floor. She
has just been sent back to the hospital for an evaluation
after two days in rehab. The professional staff quickly realized that
rehabilitation was not, in fact, a realistic goal for Mom.
L and I walk
into the hospital room together. Not 30 seconds later, a nurse comes in and
says that only one visitor at a time is allowed. Since I
had just arrived, L defers and steps out.
I have a speech
prepared actually. I sit next to Mom, whose eyes are closed and I put my hand on her arm. I speak directly to her soul and I speak about things that I
never would have had the courage to say to her in her previous, normal life.
I talk about the eternality of the soul, about the pleasures of the World to
Come, about techiyat hameitim (revival of the dead) and how one day we
will be together again and we will be whole spiritual beings then, without any
of the diseases of this life.
Her breath
twitches at times and that scares me some. Her toothless face is disquieting.
She only looks like Mom from the nose up.
I recite some Tehillim
(Psalms) from memory and then remember the app on my phone that has all of Sefer Tehillim (Book of Psalms), so I use it to say a
few more chapters with which I am familiar.
I am content
with the way I have spent my time with her during this visit. I get up, kiss
her forehead and step out into the hallway to give my
sister a chance to be with her.
L asks me to
call a certain number and speak to a woman from hospice while she spends time with Mom. We already know that Mom’s doctor recommended that she be
evaluated for hospice services and they want to hear more
from us about Mom’s condition.
Hospice turns
out to be the answer to an unspoken prayer, because shortly before, we were completely baffled about what to with Mom once she gets discharged.
Suddenly, hospice offers us support and a direction. Just over 48 hours later,
she will begin the next stage of her journey as a hospice patient.
Those Crazy
Hats of Yours
January 5, 2022
By now, we know
the rule is that only one person is allowed in her hospital room at a time, so I go in first, while L goes to rehab to pick up what Mom left behind
when she was transferred back to the hospital. Mom has been
relocated to the orthopedic ward which, ironically, is
very far from the lobby. I’m walking with a cane because the combination of a 14-hour flight and walking miles through two international airports has
put a strain on my right knee. I look more like a patient than a
visitor as I hobble to the elevator that takes me to the
orthopedic ward.
Mom has a
private room now and we can tell it’s a nicer ward than where she was yesterday.
She’s sitting
up when I walk in and she says hello. I’m a bit taken aback because I wasn’t expecting actual conversation, but for the 25 minutes or so we spend
together, she is more present than she has been in months.
I talk about my
grandchildren and ask if she wants to see pictures. She says she does and when I show them to her, she pronounces them “cute”. She asks about the
Bluetooth device in my ears and
I tell her that I have some hearing loss and they help me hear her better. She points to the patterned hat I’m wearing and teases me, saying,
“Those crazy hats of yours!”
I ask her about
how much she sleeps and she informs me that there’s not much else to do. If her
words ended in emojis, there would have been a winking emoji right there. She
shows me the kit of self-care products they have given
her, including a travel size tube of toothpaste and I joke that she doesn’t
need that because she has no teeth. She asks if she can take these things with
her, “wherever I’m going to live.”
We’re not
debating an obscure Talmudic conundrum or sharing deep emotional secrets, but my
mother, who has been sleeping 23 hours a day, is awake,
sitting up in her bed and communicating with me.
L texts me that
she’s back and waiting for me to come down so she can go up. I tell Mom that I
am going to go and L is going to come up. I kiss her and tell her I love her.
The brim of my “crazy hat” hits her in the face a little and we laugh.
I hobble back
to the lobby where my sister waits and I say, “She’s unusually alert today.”
After L’s
visit, I am sitting on the bench in front of the hospital, talking to E who is
still trapped in Israel and L comes out. I see tears on her face. She, too, was
able to connect with Mom in a way that hasn’t been possible in
some time.
We know this
visit was a gift, a blessing. We know that we might have just witnessed the last
wisp of her personality, expressing itself in this world.
Her Last
Manicure
January 11, 2022
Before the
pneumonia, even during her months in memory care, Mom always had long, polished
nails. Just like I can’t picture her in the past without dentures, I can’t
picture her without manicured nails. It was her signature look.
Two or three
times, when she visited us in Israel, she would have her nails painted blue and
white, with an Israeli flag hand-drawn on the nails of her thumbs and ring fingers. She got a lot of attention from our friends and from
random strangers who noticed her Israeli manicure and on Facebook when I posted
a picture.
Today, I
sit with her in her hospice room, look at her hands, I think, “Mom has probably
gotten her very last manicure.”
She has lost
more than 30 pounds in the past few weeks. Her physical needs and wants are
exceedingly minimal. L points out how bony her face has become.
She continues
to sleep during most of my time with her. I continue to thank her. For giving
birth to me. For letting each of her children choose their own paths. For my
love of reading that surely came from her. For her pride and willingness to
read the stacks of articles I wrote and would save for her visits to Israel.
I thank Hashem
that she’s not in pain and tell her that there are people praying for her all
over the world. I watch her mouth move as if she’s speaking, but no sound is
coming out. I tell L I think she’s having a conversation with souls in the next
world. She agrees with me.
I think of the
phrase “a fragile house of clay” and picture me lying in a bed like that
someday, with one of my daughters sitting by my side. To the extent that we get
to choose, I think I’d rather go suddenly.
Because Mom had
Alzheimer’s before the pneumonia, we don’t know how much she understands about
her current situation. We hope she is more soul than body or mind now, spending
most of her time in some blissful, liminal world before her transition to the
next world.
She is 86 and
her life, which was becoming increasingly small before COVID, became practically
microscopic while she spent 18 months in her apartment, alone but for visits
from L and a series of part-time aides who came a few days a week at first and
eventually every day.
Mom is mostly
docile. She is not attached to oxygen. She does not need pain medication. She
still eats a few hundred calories a day, fed to her by kind hands and kind
hearts, people who have been sent by God to care for those taking their final
journeys.
These are the
blessings of the end of life.
Red Peppers and
Good Enough
January 12, 2022
L and I sit and
talk about random Mom memories. How the red peppers she loved are the only
color peppers I don’t eat. How we line our trash cans with extra bags like she
did and how when we shop, we hear two voices – our father saying, “Buy the best
you can afford,” and our mother saying, “This kind is good enough.” How she
might have felt in the early years of her marriage to our father. How she
traveled the world with another man in her 70s. How things that hurt me growing
up might have looked to her and why it’s possible to forgive when I consider
things from her perspective.
It’s shiva type
talk, even though she isn’t dead yet. It’s helping us grieve.
I’m Waiting For
L
January 13, 2022
On the way to
hospice, E predicts that today, we will get a bit more of a reaction from Mom than
we have been getting. As we enter the hospice building, after checking our
temperature and answering the standard COVID screening questions, we meet first
with one of the hospice social workers. We learn that Mom has been approved for
two extra days, so she won’t move back to her memory care facility until
Wednesday morning. Hopefully by then, the COVID breakout in her unit will have
passed and we will be allowed to go see her there.
L goes into
Mom’s room first and E and I follow shortly. L and E tend to speak to her
loudly, to try to get her to open her eyes. Today, they have some success. She
opens her eyes briefly and we tell her who we are.
When we visit,
we each get some alone time with her. Today, I go first. I tell her it’s okay
to sleep because I am speaking to her soul. I try to send her some of Hashem’s
light with messages of love and appreciation.
I say Esa Einai (Tehillim 121) out loud, both because it is one of the first
chapters of Tehillim I learned by heart and also because there is a commentary
on the last verse that says tzetcha u’vo’echa (your going out and your
coming in) is a reference to leaving this world and entering the World to Come.
That seems fitting to say to a woman lying in a hospice unit.
The Lord will
guard your going out and your coming in from now and to eternity. - Tehillim 121:8
I do some hitbodedut
(personal prayer) out loud, asking Hashem to make Himself known to her. I thank
Him for making her my mother. I ask for a gentle transition, filled with light
and sweetness and I am not at all self-conscious because I don’t think she
hears or understands me with her ears.
I tell her H
isn’t able to come but that he will send a message to her so she can hear his
voice.
I thank her
again for the gift of not judging any of her children as we each chose a
lifestyle different from hers.
I sit quietly
and think, “I was conceived, carried and brought into this world by this body,
now lying in a hospice bed.”
And then I stop
thinking and just sit.
Mom starts
moving her hands. I notice they shake. She seems to want something. I ask her
if she needs anything. She says, “I’m waiting for L.” I’m shocked when I can
understand anything she says.
I tell her L is
sitting outside and I can get her. I lean over her bed, stroke her bony face,
kiss the little bit of flesh that remains on her cheek, tell her I love her and
then I’m almost positive I hear her say, “You can go now.”
I step out into
the hallway where my sister is sitting with my husband and I repeat what Mom
just said. “I’m waiting for L,” and “You can go now.” I’m laughing and crying
at the same time.
As is our
pattern, L and E also have a little alone time with her. During his turn, E
calls us in because Mom was trying to get out of bed. L puts her back in bed
and I get the nurse who comes to help. Mom needs some nursing care and so we
prepare to leave. We say, “We love you Mom,” and she says, “Love you.”
I wipe away
tears and then we go to Walmart to find comfort.
Yellow Brick
Road
January 15, 2022
On Shabbat
afternoon, as I read my fourth novel since arriving, I wonder what the proper way to behave is, what is one supposed to feel, when one’s mother is
dying, but not imminently?
We go for a
visit after Shabbat. As I sit by her bedside, noticing that her face is
constantly in motion, even in sleep, I recognize the music playing in her room
is a musak version of Elton John’s Yellow Brick Road.
Oh, I've
finally decided my future lies
Beyond the yellow brick road.
Seems
prophetic. Or melodramatic. Not sure which.
I play a
message from H who can’t be here but wants to say goodbye. I play it twice for
her even though she’s sleeping and what she says is, “Okay.”
I trust Hashem
and His timing, but it’s hard to see her unchanged visit after visit – dying, but
not today. Only emunah helps me accept this extended time when she is barely
herself, but not yet gone from this world.
Is she dreaming
during the 23+ hours a day that she is asleep? Is she experiencing the next world
and then being sucked back into this world when we visit and try to awaken her?
Thinking about
her makes me want to scream, “I’m alive! I’m still alive!” Her dying
intensifies my experience of living.
Twenty-seven
years ago, I flew to my father’s deathbed. I had a 10-week-old baby with me, a
four-year-old back home and a new, full-time job set to start on a few days. I
came to say goodbye, but I could not stay.
Today, my
considerations are different and we made the decision to stay for the duration.
Now I can stay.
Now I must
stay.
Lorna Doones
January 16, 2022
There’s a snack
corner for visitors in hospice and every time we go, L and E each get a pack of
Lorna Doones. It’s become a ritual.
This morning’s
visit is a little different because we are all in the room together. She opens
her eyes and looks straight at me and L preserves the moment in a photo.
She hardly
looks like herself, though she says a few tiny things today that sound like
her. She hardly says more than a word or two at a time, but today we all hear
her say a few words and then we automatically repeat them to each other, not
because they are profound, but because they are so rare and, therefore,
precious.
There isn’t
much any of us can do for her anymore. Her needs are so minimal. I hold a cup
of water for her, put a straw in her mouth and say, “Good job” when I can see
she has managed to suck some water up through the straw.
Blessed Are You
O Lord Our God
January 17, 2022
I didn’t sleep
well last night, old memories rolling around my brain.
I’m very young
and very sick, not hospital sick, but home-in-bed sick. Mom returns to my room
again and again and gives me a tiny amount of water to drink each time.
I’m a bit older
and I have allergies to moss, mold and ragweed that exacerbate my childhood
asthma. Every Monday afternoon, Mom picks me up from school and takes me to get
an allergy shot and then she takes me to White Castle.
I know what
you’re thinking about White Castle, but keep it to yourself.
Don’t yuck my
nostalgic yum.
It’s Chanukah
c. 1966. We are in our childhood home. In my version of this memory, only Mom
and I are present, but that might not reflect reality. She stands at the front window
of the living room near the electric Chanukah menorah (the one with orange
bulbs), a square of paper towel she has recently torn from the roll perfectly
balanced on her head.
She recites, “Blessed
are You O Lord our God, King of the Universe, Who has sanctified us by Thy
commandments and commanded us to kindle the lights of Chanukah,” and twists
some bulbs until they are illuminated.
This is the
most explicitly Jewish thing I’ve ever seen my mother do. Four decades will
pass before she will stand next to me and light Shabbat candles in my home in
Israel.
Mom never, not
once, expressed disapproval or any level of discomfort when I pivoted towards a
more Jewish life back in the 1980s. When, in 2010, I tell her we are moving to
Israel, she says, “Then I guess I’ll just have to fly there to see you.”
And so she
does.
L reminds me
about the Barbies Mom buys us when I am four and she is six. I don’t remember
the original acquisition, but I remember the Barbie clothes she makes for our
dolls. I picture the blue skirt and matching vest with the gold rickrack she
makes for me when I’m in 6th grade and that I wear on class picture day.
When I am 12,
she takes me to visit her friend Adele. Adele gives me the traditional slap on my
cheek when I get my first period.
I help Mom
unpack the groceries and put them away. I am excited because now my
brother and sister and I will each get a whole paper Dixie cup full of M&Ms
from the new bag she just bought.
She flies with
Dad from Florida to College Park to see me when I am an undergraduate student.
She comes back for my undergraduate and doctoral graduation ceremonies, for my adult
Bat Mitzvah at a Reform congregation in Baltimore, for the births of my
children and for their bnot mitzvot and she is at every one of my three weddings.
When my first child marries in Israel in 2014, she is there.
It’s October
2021 and I’m in Florida to help L close out Mom’s apartment. We alternate between
days spent dealing with her remaining worldly possessions and financial obligations and going to visit her in the memory care unit into which she has just
moved.
My last day in
Florida, L and I go to see her. Even with her limited cognitive abilities, she understands
that I am leaving to go back to Israel. When I say goodbye, she starts to cry and
waves me away. This is only the second time I have seen my mother cry in my
entire life, and I am already a grandmother myself.
It breaks me.
When I visit
Dad on his deathbed, pancreatic cancer riddling his body, he is unrecognizable.
I am certain it is him only because of his voice. My father, who has been
dealing with severe mental illness for the past 12 years, is extraordinarily,
uncharacteristically, lucid. We talk deeply and completely. We talk about love
and about death. He tells me death is a part of life, not to be feared. My
10-week-old daughter is pink and squirmy next to his jaundiced and dying body.
His mind and
his personality are fully intact. It is his body that is failing.
When I visit
Mom now in her hospice bed, we think she knows L and I are familiar, but she often
doesn’t know our names anymore. Like Dad, at this stage, she looks nothing like
she did in life. Unlike Dad, there’s nothing
life-threateningly wrong with her body. She is not in pain. She is not on
oxygen. But her brain is fizzling out.
Minimal Life
Force
January 18, 2022
Just L and I go to see Mom today. She is more agitated than she has
been. At some point, she is looking up at the ceiling and seems to prefer that
to looking at either of our faces. We wonder aloud to one another who she sees
up there.
The list of things she can do for herself is tragically limited. Despite
the fact that her hands shake, she is able to scratch her own face. She can
move the blanket down below her shoulders.That’s practically the whole list of
what she can accomplish without assistance.
She is alive, but sustained by the seemingly barest level of life force.
She will die in bed without her feet ever hitting the floor again.
She talks a lot today, but we can’t understand most of what she says
and, truth be told, we’re not sure it’s intended for us anyway. I cling to the
hope that her soul is trying to communicate with souls she recognizes in the
next world, but it could also be the delirious chatter of her dementia.
A made a video for Mom, telling her a story that involved how much she
appreciated a special gift Mom gave her a decade ago. We play it and Mom’s eyes
flutter, but we don’t know how much she understands. The sweetness of the video
makes L and me cry.
Today is L’s birthday. We have four more hours to go before we can
breathe a sigh of relief
that Mom didn’t die on her birthday.
Death comes slowly sometimes.
This is one of those times.
The Fifth Commandment
January 19, 2022
The fifth commandment is honoring one’s father and mother.
There isn’t a lot I can do for Mom anymore, at least not in the physical
realm. The limited physical care she needs is being handled by trained
nurses.
This morning, I thought of something I actually can do for
her. This coming Shabbos will be our third Shabbos here, and there is no way of
knowing how much longer E and I will need to stay.
It’s unsettling to be away from home for weeks at a time, with no known
end date. Things come up and have to be postponed or missed entirely. We need
to rely on others to get basic things done that we aren’t there to do for
ourselves.
There is also a constant cultural divide to endure. I face challenges
daily. I am attracted to and repelled by the consumer culture here in equal measure. Dozens of times a day I
have to tell myself, “No I don’t need to buy that,” even though my id is
screaming “Want it! WANT IT!!”
I actually consider how pleasant life could be if we lived here. I
completely and utterly covet my sister’s house.
It’s far better for me to be in Israel where the acquisitive energy is
significantly less intense, where my soul is nurtured so much more readily,
where God and Torah and Moshiach are more easily accessed.
Staying here is a gift for my mother. It’s a partial fulfillment of the Fifth
Commandment.
It’s what I can do for her now.
Dying In Bed
January 20, 2022
I sit in my sister’s living room waiting for the chicken soup I am
preparing to be done. Tomorrow will be our third Shabbat here and I have grown
weary of turkey sandwiches so I tap danced my way around a non-kosher kitchen
and, with a few brand new pots, utensils and foil pans, I’m kind of making
Shabbos.
Mom is resettled in her old room in memory care, still a hospice
patient. There has been very little change in her condition since I’ve arrived
and I’m starting to doubt my decision to stay until the end. What if it’s
months instead of weeks?
Immediately as we walk into the memory care unit, we come upon the
hospice social worker who has just been assigned to Mom’s team. We have a
million questions for her.
As we stand huddled in the hallway talking, a memory care patient breaks
into our huddle. One of the staff members tries to distract her and enthuses,
“Let’s go bake some cookies!”
The other patient says, “I don’t want cookies. I want to know what’s
going on!”
We are all amused, but we walk away and regather further down the hall
just the same.
Mom is back in her old room, this time in a hospital bed that looks like
it’s from 1947. She’s wearing her own clothes. She opens her eyes when L speaks
to her but she has trouble focusing them when she turns her head in my
direction. Or she doesn’t want to look away from L.
I’m not sure.
Sometimes we talk about how much harder this is for us than it is for
her, but we don’t really know.
She’s not in pain, not agitated, not on oxygen. Nevertheless, chances
are, she’s going to die in that bed.
It’s deeply humbling.
Hours later… a horrifying thought. What if that’s my future? What if I,
who live so essentially in my own mind, develop dementia at some point? What if
I’m the one lying in a hospital bed in a memory care unit, barely able to
recognize those I have loved my whole life, even as they stand around my
bedside? What if the very act of coming to see me makes them anxious or sad?
I can’t dwell on this thought. It’s too stark.
She Chuckled
January 21, 2022
I make a list of all the variables involved in staying or going and talk
them out with L, E and A. Mom’s condition has been pretty stable since I
arrived, but if we leave, there’s a good possibility we won’t be able to get
back for the funeral because of COVID and quarantine.
We decide to reassess in a week. E and I have enough medication for 13
more days and are looking for ways to get more without US health
insurance.
On the ride over to see Mom, it’s 78 degrees. The car windows are open
and the air feels so delicious blowing on the back of my neck that it makes me
want to cry.
We’re missing, or rather not missing, very cold and rainy weather in
Israel.
Time moves slowly where there isn’t much to do. In the novel I read this
morning, there is a scene where the main character gets word that her elderly
mother is dying in a memory care
unit.
Art imitates life.
When we arrive, we are able to wake Mom. She talks a little,
communicates that she’s comfortable. E tries a bit of humor on her and she
chuckles. She chuckles again when he tells her it’s almost Shabbat.
I explain to her about the oxygen that’s coming to help her breathe more
easily. She asks, “When will I see you?” I remind her that we are here now, L
will come tomorrow and then we will come on Sunday.
We straighten up her room a little and find the folding chair, so now
everyone has a place to sit. Mom turns over and goes back to sleep and we sit
quietly near her bed.
It’s actually kind of peaceful.
There’s a book with a pair of her reading glasses by her bedside. It’s a
scene from another life. She hasn’t been able to read in half a year or
more.
An acquaintance tells me, “Although the body is not what we recognize,
the soul is still intact.”
That comforts me.
Three Weeks Now
January 24,2021
Sometimes I feel I’m doing this all wrong. I’m not thinking of Mom 24/7.
I’m not sitting by her bedside for hours a day. I’m imagining myself in my own
kitchen. In my own bed.
I’ve been here three weeks. Her death seemed more imminent then than it
does now. She’s still on hospice, but the nurse cheerfully reports that she’s
eating and drinking better. L says she looks better. Not like herself, but not
as much like a corpse.
We expect to get a sense tomorrow about how things are progressing so we
can make a decision about whether or not to go home for a bit. I did some
research on one of E’s prescription meds and the cost for uninsured patients is
over $900. So that’s a factor.
I wrestle with guilt. I fly thousands of miles and stop my life for
three weeks and still, I worry I am not doing enough.
Does she know me when I am with her? We think she knows, she recognizes,
something familiar when we visit, but she doesn’t say my name anymore. L has
been taking care of her for all these years, while I’ve lived 6000 miles
away. Hers is the last name to go.
One of the hospice nurses reminds us that Mom’s journey is her
journey. We can’t take it with her.
We ensure she gets compassionate, skilled care. We monitor what goes on
with her medically and ask a lot of questions. We visit and touch her face and
her hands and kiss her and tell her we love her. We say Tehillim and sit by her
bedside and ask HaShem to make her transition a peaceful one.
We thank God she’s not in pain or distress. She sleeps all day in
relative comfort. She’s clean and fed.
Almost all of her meds have been discontinued. She has oxygen now so she
doesn’t have to work so hard to breathe.
And if we decide to go home for a bit as her journey progresses, I pray
that Hashem gives me the strength to say a goodbye filled with love and
then to walk out of that room.
It Hurts. Make It Stop.
January 25, 2022
The hospice nurse did an evaluation of Mom today and gave us the okay to
go home for awhile.
When we go to visit, Mom is agitated. Her oxygen cannula is dislodged and
won’t stay in when I try to replace it. E calls a CNA who finds a way
to readjust it and we watch as the unit nurse gives her morphine mixed with
Ativan to help her calm down.
She faces L and actively reaches for her hand while I hold the other
one. She looks at L a lot. L says it’s because she
speaks louder but I know it’s because L has been taking care of her for years.
She deserves it.
I’m the one who left.
In 1979.
Forty years later, this place haunts me with familiarity. The names of
exit roads on I-95. The way the rain comes suddenly and disappears just as
fast. The endless strip malls. The endless palm trees. The endless flatness.
Mom says someone is coming tonight to pick her up and take her home. L
asks where home is and she shrugs with the not knowing.
The hospice nurse gives us a booklet about what to expect at the end of
life. The book says it’s common for a dying person to speak of taking a
trip or packing a suitcase or going on vacation as a precursor to leaving this
world.
I have to catch my breath before I can read the next sentence.
The woman lying in that bed has been my mother since the moment I was
conceived. But now, it’s all about her body and her soul going their separate
ways.
I am a mere witness.
