Hard Times at Hospice

I've been having a challenge at hospice this week.  But I can't tell you the most details because of healthcare privacy.

There is a person I'm visiting who is near the end of life.  I'm composed in her and her loved ones' presence, but when I leave the room, I get all teary and upset.  And when I've talked to our hospice priest and volunteer director about it, I get equally choked up.  I've always said, when people who've had loved ones in hospice admire my work in hospice, that it isn't the same as losing someone I know.  And that's true.  A couple of years ago, when I had the same patient for 18 months, I got teary in the same way the last few times near the end when I would leave, knowing it was very close to her end.  This hasn't even been like that.  And I'm somewhat surprised.  But our dear hospice priest, my buddy, teases me that I'm human. 

It doesn't help that many of my recent trips to hospice have been consumed with paperwork.  There seem to be fewer volunteers doing the data entry and filing, and I get stuck doing a lot of it, which means spending less time with patients.  I'm almost out of practice!  And then I'm reluctant to head to hospice because I dread the paperwork. 

So yesterday, in my sad state about my current patient, I just abandoned the paperwork, leaving it to someone else.  I sat with her, made her a card for her nightstand, spoke with her loved ones, meditated, and then had a jolly lunch with the priest instead.  I did the good work of chaplaincy and self care, not the bureaucratic stuff.

May she be free from disease, pain, and suffering and the causes of disease, pain, and suffering.
May she be at peace.

Bless This Body

I was very touched by being with a deceased patient while the nurses prepared her body last week.  But I searched for something appropriate to say or pray (she was Jewish and I’d already said the 23^rd Psalm.)  Similarly, when I was visiting my homecare patient who has no religious tradition, I wanted a longer ritual for massaging her hands and brushing her hair.  I started reflecting on a blessing for bodies that could be used both before and after death, the very physical bodies that are suffering and dying but had once been full of life.  I thought on the blessing of the hands that I knew from my last hospice position, and then searched online.  There are several variations of blessings of the physical body from the body-washing rituals of Judaism and Islam.  I also found a Wiccan variant.

Here is mine; it is not a poem with a final version but a draft always in progress.  Adapt based on the person; adjust to present tense for the living, past for the deceased.  For a less pagan version, I might adjust “blessed be” to “I bless”; you might even say “thank you for” or “we are grateful for.”

Bless This Body

Blessed be your hair that has felt the touch of wind and rain;

Blessed be your head, where dreams were made and memories cherished;

Blessed be your eyes, that have seen beauty and sorrow;

Blessed be your ears that listened to laughter and cries, music and silence; 

Blessed be your lips that have kissed loved ones good night;

Blessed be your shoulders that have carried children and burdens;

Blessed be your arms that have wrapped us in your love;

Blessed be your hands that have worked and strained, tickled and touched, created and cared;

Blessed be your heart that beat in time to the joys and sorrows of this world;

Blessed be your lungs that gave breath to your voice;

Blessed be your skin that has glowed in the warmth of the sun;

Blessed be your legs that stood proud;

Blessed be your knees that have knelt in wonder—at a child, at a flower, in prayer;

Blessed be your feet that carried you on your own path through life.

Blessed be this body, this person, our loved one.

Blessed be.

Reflecting on Yesterday

I have 79 hours left!  And five papers.  Here is an edited version of the one I wrote for Monday.

(Trigger warning:  death, medical descriptions)

Today I watched the nurses prepare a woman’s dead body for her daughter to come in the room to see her for the first time.  The daughter had arrived just after her mom had died, after a protracted illness in her late 80s/early 90s.  While the daughter called her Rabbi and her sister (in that order, I believe, because there was some family tension) in the hallway, I stood just beyond the foot of the bed, right inside the curtains, to watch.  The woman was not 10-15 minutes gone at this time, no rigidity had set in; when I touched her later, you could still feel some residual warmth.

The CNAs rushed, carefully, to get the woman ready, which mainly involves removing all the unsightly signs of death.  Bodies drain, a lot, when death happens, out of more than one orifice—and every time they moved her body, there was more drainage.  I think they had to change the sheets and her gown twice; she was on the small side but very clearly dead weight—they used a sheet under her to roll her from side to side.  Lots of linens piled up.  They put her in a new set of diapers, just in case.  Once she was positioned, they wiped her face and arms really well, removing all the schmutz that seems to gather on ill people.  The nurse wiped eyelashes and lips and front teeth and inside her nose and between all of her fingers and in the folds of her neck.  They added cleanser to her hair to comb it.  And used lots and lots of deodorizer, apricot-scented.  They covered her back up in blankets, tucked a pink carnation in her hands, and then tidied up the room.  All the medical supplies from her hospice stay were removed and her bedside table was put in order.  She was ready. 

Her daughter’s first comment was “Dead looks . . . dead.  She really looks dead.”  There is no way around that.  She kissed her mom and stroked her face, noticing that the warmth was beginning to leave.  She was sad but relieved.  No prayers now as she went in search of her arriving husband.  So much to organize for the funeral service and luncheon and shiva arrangments and apparently that sister to fight with.

After that, I went to meet and visit with the homecare woman about whom I’ve written before and in my last reflection.  She has become more lethargic and confused, owing to the meds used to treat her high levels of anxiety and increased number of panic attacks.  But she was glad to see me.  She can barely talk and fiddles with her oxygen (her levels dropped into the low 70s while I was there because she takes the mask and the tube off to cough and eject mucus.)  And so I massaged her hands with nice lotion and paraphrased a blessing I learned as a hospice volunteer years ago. 

Blessed be the hands that have touched life.Blessed be the hands that have nurtured creativity.Blessed be the hands that have held pain.Blessed be the hands that have embraced with passion.Blessed be the hands that have closed in anger.Blessed be the hands that have planted new seeds.Blessed be the hands that have harvested ripe fields.Blessed be the hands that have cleaned, washed, and scrubbed.Blessed be the hands that have become wrinkled with years.Blessed be the hands that are scarred from doing justice.Blessed be the hands that have reached out and been received.Blessed be the hands that feed those who are hungry.Blessed be the hands that comfort the dying and touch the dead.Blessed be the hands that greet strangers.Blessed be the hands that guide the young.Blessed be these hands.

We didn’t talk about death and dying, faith or the afterlife, she craved presence.  But I know what I would have said; I would have told a story, drawing on Kate Braestrup’s story in Marriage and Other Acts of Charity (as well as her idea that logos can be translated both as “word” and “story.”)  A religion professor (a student of Paul Tillich) used to ask his class to name what a woman looking out his window at the lake would most likely see.  They predictably answered “people, boats, water, birds, trees, etc.”  No one would mention the window, the glass right in front of the woman’s face, though even the cleanest window is a tiny bit visible as you look out it.  The religion professor noted that Jesus Christ was the window through which people look at God and that, continuously through the New Testament, Jesus points away from himself to God.  In that way, not just Jesus but all prophetic men and women point us towards the sacred; religion helps us understand our world and our place in it.  I would have reassured her that it didn’t matter which window she looked out of, as long as she took in the view.  But I didn’t want to tire her with talk, especially as her afternoon meds kicked in.  Her partner of 25 years ever so gently administer her meds and fluids through her feeding tube, carefully gauging the measurements and checking for leakage.  I hadn’t seen a feeding tube in action.  I felt my day come full circle--death and dying, illness, fluids, leakage, love, and care.  And I meditated, "grant peace to those who suffer and strength to those who help."

In Honor

Last week, I had a conversation with a hospice patient that touched me deeply.  He was an African American man born in the South in the 1920s.  And as he told it, he had seen so much violence and hatred in his lifetime--in fact, he said that when he was a young man, he would have been killed for talking to me alone as we were.  What was it all for, he wanted to know.  And where was religion?  Did I think that the world was a better place because of a belief in God?  He was thinking not only of our present challenges--terrorists in the name of Islam, Catholic priests who molest children--but of all the white preachers who supported racism especially in the Civil Rights era.  He was incredulous, saddened, at the anger and hatred.  He said he believes that God is love and wishes more people knew that, acted like it. I said that I vacilate in my thoughts on religion--that there has been much violence and prejudice and hatred in the name of God and belief systems, but that I had also seen many people trying to help their fellow humans and the world--feeding the hungry at our local soup kitchens and food pantries, collecting clothes and coats for those in need, housing the homeless in our churches during the winter, working for non-violence and social justice and the like.  He asked me if I had any good news.  I told him that I had hope for the future, paraphrasing King, that the moral arc of the universe bends towards justice. That while we couldn't have talked like this in his childhood, we can now and I teach my children so that they recognize the inherent worth and dignity of all people and work for justice and equality.  He seemed to agree. We said goodbye soon after.  I hope I get to talk to him again.

Cycles and Circles

Life and death.  Birthdays and funerals.  The rain and overcast skies added to my reflective mood this week, especially yesterday.  As a pagan friend told me, "cycles and circles."  I've always emphasized the pagan interest in natural cycles, the circle of life, and death and birth again.  Yeah.  It's been a lot recently.  My uncle.  My local friend.  My hospice patient.  The first anniversaries of my uncle's and cousin's deaths.  Not to mention starving polar bears, the poverty in Haiti (see the article in the NYTimes), Roy Moore (even if he didn't get elected), #45, the tax bill, the bombing in Times Square, the fifth-anniversary of Newtown.  I'm reflective, low-key, and, yeah, somewhat down; it's not terrible or paralyzing or clinical, only blue.

Except at the same time, with the lows, I'm having some great highs:  lovely birthday lunch at Bloodroot with my favorite grilled cheese, tofu and cabbage salad, and yummy brandied fruit with ice cream (with lots of pineapple pieces and orange peel); kindness from my hospice patients' family at the funeral; an owl made by Sis, a great tangled dragon made by Bud, a book on historic costumes from Mama, a book on a cat who does hospice rounds from Gommie; pizza for dinner followed by chocolate cake made by Sis; lots of texts and posts from friends and family; great photos of Sis with "her" pony, Bud at kung fu, and the Snowy Owl; finishing another crocheted blanket.  And then today, at hospice, I was playing "Greensleeves" on the piano and a woman came in. She said that was her favorite song--and her mom's favorite song--and her mom had just died.  She couldn't believe she heard the song playing, like a miracle or a blessing sent by her mom, she said.  It was so touching and uplifting.

It's all about the light in the darkness, as we approach the longest night of the year.  No wonder Jews are celebrating Hannukkah now--the miracle of the light--and pagans will observe Solstice; even Jesus is the proverbial light in the darkness.  (Though, I am well aware of the problem of equating darkness with "bad" especially with the resurgence of so much public racism.)

Circle and cycles.

Planning for the Ending after the End

My uncle has been laid to rest, in a two-day combination of memorial service, visitation, and graveside service, with a BBQ meal after.  My mom and her siblings helped my aunt plan the services and write the obituary, all of which was made more difficult by the fact that none of it had been discussed beforehand with my uncle, and that my aunt and uncle didn't belong to a faith community or identify with any particular cultural traditions.   So everything had to be designed from scratch, from service to venue to officiant; I'm sure it was exhausting.  But I understand that they helped each other, made the tough choices, and created a lovely celebration of my uncle's life.

As my mom has long said, funerals are for the survivors.  But I do think it helps ease the mind of the main mourners if the service reflects or even has input from the deceased.  My folks are not interested in church or religious funerals for themselves, obviously.  In fact, my dad says his obituary can read "1940- [date]," which doesn't really make for a great remembrance, so unless he leaves us one, we'll have to write it.  My mom, as she frequently explains, is interested in the dash between the dates, so I can see some kind of celebration with lots of photographs and an obituary with lots of detail (not just dates, places, and survivors.)  Both talk about being sprinkled somewhere (over the duck pond at Wildwood for my dad), so gravesites and stones aren't in the cards.  My mom has never believed in leaving flowers in cemeteries anyway; she always buys herself a poinsettia for Christmas and lily for Easter instead of leaving them at her parents' graves.

I've already tried my hand at my own obituary; it definitely needs to be amended and shortened.  I'd love to write an ethical will  to leave behind, beyond just my distribution of belongings.   And I've thought before, often when I'm waiting for a funeral to begin or I'm leaving a wake, about what I want by way of comemoration.  I like UU funerals--some music, some readings ("Wild Geese" by Wendell Barry, or Mary Oliver's precious life poem), an Order of Service with a picture and a favorite quote or poem, a short eulogy, the invitation for attendees to share a story.  I remember music playing as people gathered for my paternal grandmother's funeral, gentle Christmas tunes as she died in December about a week before Christmas.  I'd love to have a selection of music playing as people gathered--things I like (musicals, Indigo Girls, Wham!, who knows)--and maybe accompanying a slideshow (like in Love Actually.)  Maybe give people a CD of the music (or the contemporary music tech.)  And pass outsome of my books that my family aren't keeping, with a special bookplate.  Or a copy of my favorite recipes.  Yes, I like the idea of funeral favors, not just little prayer cards.  There should be food.  Lots of food and drink, perhaps in the church social hall, though I go back and forth from a real dinner to just a dessert bar.  I would love it if people hung out and really talked, not just nibbled and left.  I do like the Jewish tradition of sitting shiva, a casual and informal gathering in support of the family, with food, conversation, a few readings.   I go back and forth about what do do with my body--I love old cemeteries and headstones but also feel that they are a waste of land and resources (all that fertilizer and water!) that few visit anymore; still, I might like being buried under a bench with a quote as a headstone so people could sit comfortably and enjoy the view--let it be pretty.  The idea of cremation gives me the heebiejeebies because of the fire, but I don't mind being ashes.  And then there are all these new ideas--being buried as a tree, being "bio-cremated" with alkali not fire, etc.  I don't mind being sprinkled anywhere (not sure where exactly?) or being in a pretty cannister (something Wedgewood-esque would be perfect.)  And leave my Facebook page and blog up as a memorial.

So I guess I have given it all some thought, which I think is a good thing.  Have you?

The Last Book

My hospice patient with dementia likes to be read to.  He doesn't really care what and so I picked up a Reader's Digested condensed volume with four stories--one was a romance, one a WWII thriller, something else I can't recall, and The Bear, a wilderness adventure about the duel between a huge grizzly and a hunter (I believe it is taken from James Oliver Curwood's The Grizzly King.)  I chose the last one, since he hasn't really liked discussing the war on previous occasions (he lost three brothers in WWII and served in Europe himself.)   So we've been reading The Bear.  It has long descriptive passages on the beauty of the mountains and the life of bears; occasionally, there is a big scene with the bear and the hunter.  My patient, who is usually too confused to comprehend what happens around him, has responded well and even reacted to and commented on the book.  He says he likes the way I read.

My other hospice patient, with Parkinson's disease, has trouble with her eyes and so I've been reading to her.  She had chosen Inge Auerbacher's biography I am a Star:  A Child of the Holocaust, which is a book for young people.  It is a harrowing story, but my patient, who is Jewish, has numerous books about the Holocaust and also Judaism on her shelves.

As I read to them both, I realized something quite profound:  these could very possibly be the last books they read, or have read to them.  Their very last books.

Wow.

What would I choose, if I could?  I've thought about it briefly and think, if I could choose, I would choose Little Women or Little House on the Prairie.  These are childhood books, familiar and comforting.  They are also easy to read aloud.  Through hospice, I've realized how some things just aren't meant to be read aloud--some poetry is very difficult--and the sports page just sounds stupid.  I might also enjoy Jane Austen or Charles Dickens, but I've known Louisa May Alcott and Laura Ingalls Wilder much longer.  Or Harry Potter--I forgot all about those books!  I could definitely hear those again or read them myself.

There is something about books being read by a person to another.  It's more intimate and engaging than all the televisions turned up so loud in nursing homes combined.  I can modulate my speed, I can pause, we can discuss; my patients know I'm talking just to them.  Audio books might be too fast, not tailored to the listener, easy to get lost in.  Though, I've never tried them.  And none of my patients have had audio books or even talk radio; some have music, but it's just filler.

So, what would you want to read, or have read to you, as your last book?

Season in the Sun

Trigger Warning:  Sad cat musings.


Today was one of those sunny days that Mr. P liked.  We had the windows open, the sun streaming in.  Our three cats found places in the sunlight; Mr. P would have, too.  He loved last spring and summer in his cat tree by the couch, where he sat with me all the months that I recovered from surgery.

We miss him.  I miss him.  And most days I can think of him without getting teary.  Not today.  Because it was the kind of perfect, warm, sunny day which he hadn't experienced in a long while when he died in February.  I remember my mom telling me that one of my dad's last wishes for our cat Curiosity was for him to be in the sun as he died, but of course the vet couldn't do euthanasia that way.  Cats and sunlight just go together.  "We had joy, we had fun, we had seasons in the sun . . . "

Still, Mr P loved a soft blanket and cuddling on our bed in the depth of winter and spent most of December and January upstairs with us.  He was, after all, a very social cat, always "macking" for attention and demanding rubs.  In fact, I think it was his connection to us that alerted us to his illness. When he had that blood clot in his leg that fateful night in January, he didn't hide in the basement and die from congestive heart failure right then, he somehow climbed the steps on three legs and in pain and came looking for Sis and me in the living room, wanting to be with us and trusting we could help.  We did the best we could, even if in the end it couldn't be enough.

I'm just sorry he didn't make it to a last sunny spring day like today.   But I'll always remember him like this in the light . . . .

Countdown to Easter

Thursday:
Sis stayed home because the doctor Thursday afternoon said she had probably had the flu and was only just getting over it (strep test negative.)  We lolled around, watching "Glee," our new show (yes, there are a lot of adolescent situations but it gives us a chance to talk--about sex, pleasure, responsibility, feminism, sexism, body issues, bullying, homophobia, acceptance, etc etc etc.)

Bud came home midday (it was just a half day) and we hung out for a bit before running off to an appointment, picking up some dinner, and having some frozen yogurt.

That evening, I was gone for three hours on a night shoot for a new promotional video for the historic house.  I was very self-conscious but eventually settled into my role as narrator and costumed interpreter.  In fact, though it was in no way like a movie, I had some insight into several things--waiting waiting waiting around while lighting, set, props, etc were set up; trying to keep the same lines fresh over and over again without tripping on any words; taking direction to turn my head this way, modulate my voice that way, move a prop another way, and emote half the sentence like I did in the first take and half like the second; getting the giggles when I flubbed a line (cursing, too); becoming super self-conscious of how I looked, sounded, and moved.  But I had a great time and the video turned out pretty well.  (If I know you personally IRL and you want to see a copy of it, I'll send it to you; just email me.)


Friday:
We were kinda dull on Friday, with Sis still recovering and Bud tired after a long week at school (he was probably fighting the virus Sis had without actually developing the flu.)  We had pizza and watched Beetlejuice, which holds up pretty well some thirty years later.  The kids didn't quite get it, but nobody was scared of the ghosts or sad about the deceased.

I finished crocheting a blanket for an old high school buddy with whom I've reconnected and sent it on its way; she's having surgery and I wanted her to know I was thinking of her.  It's my usual Giant Granny Square but with a new edging called the Crab Stitch (mainly reverse single crochet around a row of double crochet.)  The colors in the photo are a little muted because it was overcast--it's actually a lovely lavender, some deeper  light green, and blue.

I did manage some shopping for the last of our Easter grocery needs.  Our final menu includes deviled eggs, pimento cheese, ham, macaroni and cheese, green bean casserole, cheddar cheese rolls, green peas, and Shaker Lemon pie, with Zinger Sherbet Punch.   And I got some hyacinths and hydrangeas for Ma and for me.


Saturday:
The Easter Penguin came!    There weren't any wet footprints because we don't have carpet anymore, but he did leave the kids a set of Minecraft blocks.  We had asked Bud if he thought the Easter Penguin would come and Bud reiterated that the Easter Penguin was very reliable.

The kids skipped their morning activities, both because they weren't feeling great and because Ma and Gong arrived . . . . so we went to the movies instead!  Yep, went to see Zootopia, which was funny but also a good teachable moment on race, biological determinism, stereotypes, prejudice, free will, the role of police in society--it even had a plot to incriminate the "predators" by poisoning them with toxic flowers (see recent interview excerpts with Nixon lacky Ehrlichman who said the war on drugs was exaggerated to criminalize and oppress African Americans and hippies/war protestors.)  All it needed was #PredatorsLivesMatter.

We had lunch at a new traditional Mexican restaurant which serves fresh tableside-made guacamole, lots of grilled foods (including cactus!),  lots of authentic-seeming dishes, and fresh tortillas (I know, Texans, none of that sounds special but this is Connecticut.)  Some of it was even too spicy for Ma and Gong!

The afternoon was a hodgepodge of "It's the Easter Beagle, Charlie Brown," eating apple pie, Bud trying out Gong's tai chi sword, building an Easter nest (there were flowers in bloom this year!!), making origami bunnies and frogs, and eventually saying goodbye to Ma and Gong.

We planted a hydrangea to mark the almost-one-year anniversary of the death of beloved Aunt Sis (today, btw, was the first anniversary since my emergency surgery.)  We had planted two other hydrangeas this spring in her memory, but I think only one survived the winter (and my gardening!)

Then the "work" started!  We pulled out the Easter decorations and purged some of the books and things.  We always find extra egg decorating kits--and so Sis chose plain tab Pas dye and Bud did tie dye.  I drew on a few eggs with a Sharpie and a wax crayon--see my bunny, Bay Max, and Totoro.  Lots of fun.  Then I prepped some dishes while Mama made the traditional last-minute run to the store.  And the kids and I hid some eggs and left a basket for the little girl and boy across the street.

Whew!

And it's not even Easter yet.

Tea and Cake and Sympathy

Been a quiet couple of days around here.  Mama back at work; kids back at school.  Chores to do but not much else.  So I sit and drink my favorite Taylor's of Harrogate Rose tea in my new-to-me "vintage" 1988 Japanese Shafford creamware teapot and my NYC Starbuck's mug, both of which I got this weekend.




And notice that my sweet couch buddy, who kept me company everyday after my surgery, is gone.

Thankfully, Mama Teacher came for a visit today and we had a wonderful, comforting chat . . . and cake!  This delicious Orange Marmalade Cake from the NYTimes (I'll grab the recipe another time.)  It was even better than the Orange Poundcake I like so much (that was definitely fine, dense poundcake; this was coarse, buttery yellow cake.)  It was great to try the cake and have such a good friend with whom to share it.  A recipe for healing, for sure.


-=-=-=-=-=-=-

Orange Marmalade Cake
adapted from the NYTimes (I changed the zests)

2/3 cup coarse-cut orange marmalade, divided (though plain ol’ Smuckers Sweet Orange Marmalade is what I had and it worked)

12 tablespoons unsalted butter, softened, plus 1/2 tablespoon for glaze

¾ cup granulated sugar 

2 ½ teaspoons orange zest

3 large eggs, at room temperature

2 tablespoons fresh orange juice

1 ½ cups all-purpose flour 

1 ½ teaspoons baking powder 

¾ teaspoon fine sea salt 

4 tablespoons confectioner’s sugar

Heat oven to 350 degrees. Grease a 9-by-5-inch loaf pan.

Beat together softened butter, sugar, and orange zest until light and fluffy, about 5 minutes. Beat in eggs, one at a time, until incorporated. Beat in 1/3 cup marmalade and the orange juice.

In a separate bowl, whisk together flour, baking powder and salt. Fold dry ingredients into wet until just combined. 

Scrape batter into prepared pan. Bake until surface of cake is golden brown and a toothpick inserted in the center emerges clean, 50 to 55 minutes. Remove from oven and transfer pan to a wire rack.

Cool 10 minutes; turn cake out of pan and place on rack right-side up. Place a rimmed baking sheet under rack to catch the glaze. 

GLAZE:

Heat remaining 1/3 cup marmalade in a small pot over low heat until melted; whisk in confectioners’ sugar and 1/2 tablespoon butter until smooth. Slather warm glaze over top of cake, allowing some to drizzle down the sides. Cool completely before slicing.