Tag: hospice

This post is penned by my friend, Rhonda whose multiple sclerosis landed her in hospice in January of this year. Rhonda is a writer, and though she she’s not afraid of death, she is not ready because she still has so much to say. Like any writer, Rhonda wants to know her words are being read, so when she recently gave me her journal entries describing her first week in hospice, I offered to post them here on my blog. I am doing only light editing – formatting, mostly, and deleting the occasional sentence that the software was unable to understand and interpret. Because of the disease, Rhonda doesn’t have the breath support to string together long sentences or to sustain any volume to speak of. When we talk on the phone, she is very patient as I repeatedly ask her to repeat what she just said or repeat back the bits I understood, asking her to fill in the gaps.

You may want to start here then follow the links at the end of each post to read yourself current. It means a lot to Rhonda to know how her words are landing in the world, so please leave a comment if you feel inspired to, and she will reply as and when she is able. Rhonda writes with the assistance of talk-to-text software, and some days her energy level doesn’t even permit that, so if she doesn’t reply to your comment, don’t interpret her silence as anything but a lack of available energy or available assistance, as she now requires help to do the most basic things that we take for granted. Somebody is reading your comments to her, though, you can be sure of that, and she is receiving them with a grateful heart. From both of us, thank you for being here, for bearing witness to this remarkable, amazing woman.

~~~

Day 7

Alive!

One week here and I haven’t died. I won’t for a while. It isn’t possible. If I do, will they really shroud me too? I’m not like “them.” Yes, they will wash my dead body then shroud me just like they do to everybody. Will they be sad to see me go?

The husband is singing to his wife again and the harmonica plays again. Consistency. Home sounds. The house will get two more borders later today. Who will they be? Will I learn about their quirkiness before they die?

Mike sneaks in and grabs me from behind when I’m at the computer. “Nubby!” “Hey Moo! I thought I’d surprise you.” “Why are you here so early?” I’m dumbfounded but not sorry that he came without notice. “I thought you would want to see these letters.” He pitches them into my lap. “What are they?” He smiles. “They’re from the people who found out you’re in hospice. Should I read them to you?” He opens a letter already.

All letters were similarly solemn. Words like “sorry,” “tragedy,” “keep smiling,” “faith” and “love.” I am touched but not weepy. When Mike finishes I gather them up and present them back to him. “Please take these home and put them in my study.” He looks at me sadly.

“This room is your home now, Sweetie.”

So Real . . .

Michelle comes in to empty my catheter bag. In between trips to the toilet, we plan Mike’s birthday party still four months away. Michelle was busy telling me about a fun time she just had with her friends playing paintball. My eyes light up at the story. “That’s it!” I gush. That’s what I’ll give Mike for his birthday: a paintball party! Do older people play, too?” “Sure,” there are even people in their late 20s (she is 25).

Mike loves to play like a little boy. What an endearing quality!

When Mike brings Marco, I can’t contain my giddiness. “I am so excited about your birthday present!” I realize how silly I must sound to be overcome with anticipation four months before “the Day.” All the while that I’m talking to him my internal voice warns me, do not tell. Don’t you dare tell!

This post is penned by my friend, Rhonda whose multiple sclerosis landed her in hospice in January of this year. Rhonda is a writer, and though she she’s not afraid of death, she is not ready because she still has so much to say. Like any writer, Rhonda wants to know her words are being read, so when she recently gave me her journal entries describing her first week in hospice, I offered to post them here on my blog. I am doing only light editing – formatting, mostly, and deleting the occasional sentence that the software was unable to understand and interpret. Because of the disease, Rhonda doesn’t have the breath support to string together long sentences or to sustain any volume to speak of. When we talk on the phone, she is very patient as I repeatedly ask her to repeat what she just said or repeat back the bits I understood, asking her to fill in the gaps.

You may want to start here then follow the links at the end of each post to read yourself current. It means a lot to Rhonda to know how her words are landing in the world, so please leave a comment if you feel inspired to, and she will reply as and when she is able. Rhonda writes with the assistance of talk-to-text software, and some days her energy level doesn’t even permit that, so if she doesn’t reply to your comment, don’t interpret her silence as anything but a lack of available energy or available assistance, as she now requires help to do the most basic things that we take for granted. Somebody is reading your comments to her, though, you can be sure of that, and she is receiving them with a grateful heart. From both of us, thank you for being here, for bearing witness to this remarkable, amazing woman.

~~~

Day 6

Silence this morning is like an augury. The harmonica. It plays hymns. Somberly. Clearly.

“Joe has passed,” announces Sue. Joe who watched the eggs. Joe who Skyped his vacationing daughter. Joe I would really like to have met.

Joe’s family asks Bob to play his harmonica as Joe passes.

Sue tiptoes in again. “That’s sad, Sue.” I don’t cry, but I remember that he added light to the community here.

“Not really.” Sue is perky. “Joe couldn’t wait to see his wife in heaven.”

Three eggs still.

I imagine this stretcher leaving with shrouded Joe, Joe I never met.

We are three.

Before getting out of bed, I finish up another chapter about Mother Teresa’s darkness. I put it down and will never pick it up again. I wanted to read about Mother Teresa’s years of “now done darkness,” to feel better about my own.’

The book is a compilation of letters to her spiritual directors. As she sent them, she would write also to beg for their eventual destruction–preferably by burning. I feel really guilty for having begun the book. In a way, it is as if I am reading a most private journal. Sometimes honesty shouldn’t be communal.

The writer wanted to emphasize her great humanity and her great faith.

I saw Mother Teresa in Calcutta in 1992. I saw her humanity:

3/27/92

I have seen Mother Teresa several times now at Mass or at evening prayers. After the nuns are on their third or fourth repetition of “Holy Mary, Mother of God,” I usually lose concentration and watch Mother Teresa. She is really beautiful. She has osteoporosis, so is permanently bowed before God. Bowed on her knees before God during prayers, she looks like the fruit of the spirit incarnate. Love Joy Peace Patience, Kindness, Goodness, Faithfulness, Gentleness, and Self Control are all shining from her ashen face (she obviously hasn’t lain out in the sun lately) I watched her say her rosary and could see that it was hard for her to catch her breath between each line of prayer, and when she finally did, her lips seemed to move faster, as if she were playing catch up. A little cough or stopping to lick her lips would also put her behind. Even though she has been really sick, she seldom misses Mass and prayers. That demonstrates a tremendous amount of strength and devotion because when I am sick I would much rather focus on God and pray from my bed, than get up and do a bunch of sitting and standing and kneeling and standing Catholic aerobics. I did catch her nodding off one day. Her head was falling falling and just as it was about to hit bottom she caught it and sprang it up again, blinking her eyes big on the recovery. I liked that because it proved her human.

Mother Teresa said that if she ever were a saint she’d be the saint of darkness. Please let me hold your hand.

I get out of bed, since I’m always uncomfortable here. Robin comes in for a chat, stopping by after visiting her husband with Alzheimer’s in another care facility. She visits Ray daily.

She knows my pain.

Robin is the retired college librarian and knew a former occupant of my bed. I didn’t need to know that. I like to believe that I am the first person in this bed.

She tells me that she is working on a new reading project for Iowa schools based on the conclusion that the books we read throughout our lives seriously impact us.

She promises to come back soon. I remind her that I will only be here until I go back home or to a new facility…or . . . She nods her head.

Does she sympathize with me, imagining my losses in motherhood, marriage and vocation? Does she shake her head in disbelief that anyone could go on with such loss? I shake my head, too, but I go on. Surreal.

Don’t be too long, I think as she goes.

I spend the rest of the day at my computer. I send e-mails. I write in my journal, my connection to myself and the world. I finish composing my list of important things to my life. I do all this with voice recognition software. I can’t type, but I still have a voice.

I fall asleep remembering books, my favorite books. When I was five I loved Yertle the Turtle. At ten, Watership Down. 12, Steinbeck’s The Pearl. 15, Steinbeck’s The Grapes of Wrath. In college, Dostoyevsky’s The Brothers Karamozov. In my 20s Thomas Merton. In my early 30s Albert Canus’ The Plague and Cormac McCarthy’s Blood Meridian. In my mid-30s feminist writing. Presently, Joan Chittister’s writing.

I do not fear death. Death does not silence voice.

Go here to read Day 7.

This post is penned by my friend, Rhonda whose multiple sclerosis landed her in hospice in January of this year. Rhonda is a writer, and though she she’s not afraid of death, she is not ready because she still has so much to say. Like any writer, Rhonda wants to know her words are being read, so when she recently gave me her journal entries describing her first week in hospice, I offered to post them here on my blog. I am doing only light editing – formatting, mostly, and deleting the occasional sentence that the software was unable to understand and interpret. Because of the disease, Rhonda doesn’t have the breath support to string together long sentences or to sustain any volume to speak of. When we talk on the phone, she is very patient as I repeatedly ask her to repeat what she just said or repeat back the bits I understood, asking her to fill in the gaps.

You may want to start here then follow the links at the end of each post to read yourself current. It means a lot to Rhonda to know how her words are landing in the world, so please leave a comment if you feel inspired to, and she will reply as and when she is able. Rhonda writes with the assistance of talk-to-text software, and some days her energy level doesn’t even permit that, so if she doesn’t reply to your comment, don’t interpret her silence as anything but a lack of available energy or available assistance, as she now requires help to do the most basic things that we take for granted. Somebody is reading your comments to her, though, you can be sure of that, and she is receiving them with a grateful heart. From both of us, thank you for being here, for bearing witness to this remarkable, amazing woman.

~~~

Day 5

Do they still really think that I’m dying? Dr. Vandezande thought so before. Chronic infection, he said. An open heel wound. Trouble swallowing and breathing. Does he still believe it? I’m not like “them.” I feel so alive.

The harmonica is buzzing away again. Church hymn patriotica again. The keyboard accompanies a voice–one person or two?¬–that matches the accordion exuberance. Dueling cheesy hymns again. The musical quirkiness never ends.

Theresa comes in dangling something in front of her nose and smiles at me sheepishly. I know what time it is. I did this two days ago. An every other day schedule has brought me to this time of flashing my butt hole to the world. Michelle closes the blinds, even though I assure her that nobody can see in when it’s light outside. Besides, I say, are there Peeping Toms who hang out at hospice in the daylight?

Bowel Program, that’s what they call it. Basically, it means sticking something up my butt so that I can poop. Mike laughs that the medical lingo is so proper, so sterile. You don’t “do a bowel program” you “ take a shit.” You don’t “void” you “take a leak.’

The harmonica and keyboard both stop. A man’s voice rises steadily through the silence. I recognize the melody. Love song. The old man serenades his unmoving but bright-eyed wife. I can’t see them from my bed, but their image, tender unto death, transcends walls and time. The man ends his private concert with “Come home. Come home. You who are weary, come home…”

I am ready to get up. Theresa and Jean lift me out of bed with the robot grabber thingy that they call “Hoyer Lift,” deposit me at my computer, shut my door, and I play Miles Davis on Pandora. Am I a music snob in the corner room, or am I just asserting in my private way that I would rather die to jazz?

Later, I am sitting by the doorway. Mike all alone walks by my room on his way to the kitchen to get his usual cookie. I wave to him as he passes. He waves, too. Is he shy? Carol sees us “You still really love each other.” She sees it. I feel it.

Today is the day.

When Mike returns I ask him to sit on the bed in front of me. I take his hands both in mine, I stare into his eyes, planning to never lose the intimate contact. I will speak from the heart. “Forgive me …” I begin with the words of contrition and continue to list the horrible ways I have treated him, ways of people at war not in love till death do we part.

Among other things, I asked for forgiveness for verbally abusing him in ways that I find really shameful now. For forgiveness for ever making him believe that I didn’t think him a wonderful man. “You have been an amazing husband and Daddy.” Forgiveness… Please forgive me.

Mike leaves to get Marco from school. They will return after dinner. I feel happy.

Hubbub. A new patient has arrived from the hospital Long Term Care unit. Another was going to come also, but didn’t want to leave the familiarity of nurses and CNAs from the hospital. Will this foster child be yanked away soon, too?

Dying is not such a hard thing to suffer. Dying alone must be terrifying.

We are five.

Marco bops in again with Mike. We all love the bouncy boy vitality he brings to this place. The room always smiles when he enters.

Sometimes he flies all his toys that Daddy bought him at a unique flying gadgets toy store, specializing in all kinds of super flyers: planes, paratroopers, and manually twirled spinney flier thingies. Sometimes we play Yahtzee. Sometimes I Spy.

“I spy with my little eye… something that rhymes with… snow tire.” “no tire,” Marco guesses quickly. “No, Monk,” I gently instruct, “you have the right idea about how to make a rhyme, but you need two completely new words, one that rhymes with snow and one that rhymes with tire. I was thinking of f-a-u-x fire.” I point to my electric fireplace.

“That’s too hard.” Mike quickly joins the conversation, as if to scold me for being tough on the boy.

“He’s bright. I’ll use it a couple times. He’ll eventually get it.” I turn back to Marco. “Sweets, faux means fake or pretend. Not real.”

We’re bored. Great time to play golf! Mike has his clubs, and Marco has his kinda kiddy ones. I have my wheelchair. Together we go outside to a nearby field and hit the ball back and forth.

Before I had children, I used to dream about being a mother to at least three and showing them the wonders of the world: streams, mountains, silence, balls, bodies. I never ever dreamed . . . of this sitting and watching. Surreal

We return, well refreshed but a little windblown. Happy. Alive! While we were away, the new patient died. We feel sad that he didn’t get to experience the comfort of the Comfort House. No harmonica, accordion, or synthesizer commemorates his life. He is just gone.

We are four.

After a death the place gets even quieter. I do not hear any music for a while until the harmonica begins playing solemn hymns.

I turn to Marco. “Sweetie, I spy something that rhymes with blow wire.”

“Faux fire!” He is beaming.

Go here to read Day 6.

This post is penned by my friend, Rhonda whose multiple sclerosis landed her in hospice in January of this year. Rhonda is a writer, and though she she’s not afraid of death, she is not ready because she still has so much to say. Like any writer, Rhonda wants to know her words are being read, so when she recently gave me her journal entries describing her first week in hospice, I offered to post them here on my blog. I am doing only light editing – formatting, mostly, and deleting the occasional sentence that the software was unable to understand and interpret. Because of the disease, Rhonda doesn’t have the breath support to string together long sentences or to sustain any volume to speak of. When we talk on the phone, she is very patient as I repeatedly ask her to repeat what she just said or repeat back the bits I understood, asking her to fill in the gaps.

You may want to start here then follow the links at the end of each post to read yourself current. It means a lot to Rhonda to know how her words are landing in the world, so please leave a comment if you feel inspired to, and she will reply as and when she is able. Rhonda writes with the assistance of talk-to-text software, and some days her energy level doesn’t even permit that, so if she doesn’t reply to your comment, don’t interpret her silence as anything but a lack of available energy or available assistance, as she now requires help to do the most basic things that we take for granted. Somebody is reading your comments to her, though, you can be sure of that, and she is receiving them with a grateful heart. From both of us, thank you for being here, for bearing witness to this remarkable, amazing woman.

~~~

Day 3, Saturday

The place is buzzing with family sounds. The harmonica is playing church hymn patriotica. I smell cookies baking. My husband, Mike and my son, Marco fly a paratrooper in Central Hall with high ceilings. The itty-bitty parachute is a patchwork of lime green and orange mango, scraps that once soared for real.

I once soared also, but I feel grounded. What can it mean to fly now?

LuAnn stops in to say goodbye. She is setting off on a six-week travel adventure to Ecuador. I am happy for her. 50 with a husband and two at-home daughters. What has my life become? Surreal. I am traveling vicariously these days. It hurts, but I am happy for LuAnn.

EXPLORATION

We will never find until we first get lost.

We can’t begin to find ourselves until we spin dizzy enough to lose ourselves, to lose the old status quo.

I didn’t know what I believed until I traveled far enough away to be able to point behind and say, “not that.”

“There are roads there are roads and they call, can’t you hear it?
Roads of the earth and roads of the Spirit. The best roads of all are
the on es that aren’t certain. One of those is where you’ll find me till
they drop the big curtain…” ~ Bruce Cockburn “child of the wind”

“Two roads diverged in a wood,
And I, I took the one less traveled by,
And that has made all the difference.” ~ Robert Frost

Mike takes me home with him. John and Beth will arrive soon to our house. When I enter the room they swarm around me. “You look so wonderful!” “What beautiful color you have in your cheeks!” “Rhonda…” speaking loudly and slowly, “this is our grandson, Jacob.” I feel like I’m 10 years old.

When they figure out that I will not be dying in the next five minutes, they pick up their general chitchat. As usual John has brought music to introduce us to. He is a music professor at Iowa and doesn’t leave his work behind him too far.

Mike shows them the book of my travels with Tracy around parts of Asia and Africa in 1992. I recently got it in the mail from Shutterfly, after working on it for 14 months. John is bummed that he didn’t bring the album of a musician friend with MS who was too weak to play the trombone, so made a composition of playing the singing bowls. “The album is a testimony to the undying creative impulse.” “Darn!” “Next time…” He stares out the window.

John asks if I interact with the other patients. “No,” I say. “I don’t know what I think about that,” he says theorizing.

Mike and I leave for “home” when they do. They say they will come again soon. I remind them that I’m only at hospice for a very short time before they move me to a new care facility when a room opens up. We laugh and wave as if our parting is like any other. We drive the five blocks in silence.

COMMUNICATION

I love, therefore I communicate. I love Mike and Marco, therefore I communicate with them.

Sharing with others thoughts, feelings, and experiences makes me happier.

We will never have a good relationship, unless we are independent enough to be dependent.

I don’t support a politician unless she or he respectfully communicates with me, with my country, and with the world.

Sometimes the best form of communication is silence.

Scott holds the front door open for us. Quiet now in the Comfort House at seven o’clock except for the singing. A catatonic woman in a wheelchair is serenaded by a similarly bent man pulled up to face her in his walker with a seat. Mike and I go slowly by. “Why here?” I ask Mike. He shrugs.

The woman has light in her eyes, but she doesn’t speak or move. He starts a song I know. “Softly and tenderly Jesus is calling, calling for you and for me…come home, come home, you who are weary, come home….

There is a lot of multi-voiced revelry booming from the room next door, the room with the gentleman (all men are gentlemen here) who watches the egg sitter. Joan comes to greet us. I ask her what’s going on. “Joe is Skyping his daughter vacationing in Cancun.” Joan is obviously enraptured by the lightheartedness of the unique occasion. “You should meet Joe sometime.”

I am still up at 11, but I comfy-up the room to settle in for another couple of hours. Caffeine has not affected me for five years. Now that the Jazz has kicked-in again, I’m using it to have a nightlife. Diana has given me some faux candles to complement my faux fireplace. Is the resulting ambience faux too? No matter, I’m enjoying my room faux and all.

Go here for Day 4

This post is penned by my friend, Rhonda whose multiple sclerosis landed her in hospice in January of this year. Rhonda is a writer, and though she she’s not afraid of death, she is not ready because she still has so much to say. Like any writer, Rhonda wants to know her words are being read, so when she recently gave me her journal entries describing her first week in hospice, I offered to post them here on my blog. I am doing only light editing – formatting, mostly, and deleting the occasional sentence that the software was unable to understand and interpret. Because of the disease, Rhonda doesn’t have the breath support to string together long sentences or to sustain any volume to speak of. When we talk on the phone, she is very patient as I repeatedly ask her to repeat what she just said or repeat back the bits I understood, asking her to fill in the gaps.

You may want to start here then follow the links at the end of each post to read yourself current. It means a lot to Rhonda to know how her words are landing in the world, so please leave a comment if you feel inspired to, and she will reply as and when she is able. Rhonda writes with the assistance of talk-to-text software, and some days her energy level doesn’t even permit that, so if she doesn’t reply to your comment, don’t interpret her silence as anything but a lack of available energy or available assistance, as she now requires help to do the most basic things that we take for granted. Somebody is reading your comments to her, though, you can be sure of that, and she is receiving them with a grateful heart. From both of us, thank you for being here, for bearing witness to this remarkable, amazing woman.

~~~

Day 2, Friday

I wake up they tell me that a buncha’ friends trickled-in to visit me earlier. They were turned away because I was sleeping. They find out that I’m in hospice and all assume that dying is imminent. I am much too quick to tell them that I am only temporarily here until I go back home or a care facility opens up for me in Pella. I am not one of “them.” I am not dying soon, anyway. Mike talks that it will be soon. I don’t say anything, but I feel hurt. I feel very alive.

The nurse walks into my room, wide-eyed. I quickly ask her for tea–my usual request. She looks so harried, like she’s busy with something more important than my drink request. She says, “We are really busy now. We just had two deaths. That never happens.” She runs out of the room to get ready for two mini-memorial services. I don’t ask who. I remain quiet. Surreal.

We are four.

After a good amount of time I hear a harmonica with a clumsy “God Bless America.” Alive. Because I have been lifted and deposited into my wheelchair, I wait by the door to watch a mortician wheel away one shrouded body. I just wanted the new experience of seeing death. My friend is similar, only she likes to sit in a moonlit cemetery. “It’s not so much a meditation on death, as it is on the transcendence of life.”

My musical choice for death would not be patriotica.

Today I do not stare at the walls. I even go out the door to the kitchen. There is nice light through the windows. I see Betty “cruising” around in her manual wheelchair. I wonder if she can even see anything from her permanently bowed stature.

Angela and Shawn come with Josh, Angela’s just-about-a-man son, and Subway for our weekly gabfest. Lunch date in a hospice house.

Today’s topic naturally falls to eagle eggs. “Do they get fertilized before or after they’re laid?” Shawn asks, completely straight-faced. Angela and I don’t know how to respond. Is she serious, we wonder? Neither of us makes fun of the question because we don’t know how to treat it. Is she serious?

Our initial disbelief fades into smart-ass banter. “I know,” I say. “The male eagle gets hot and bothered around a female eagle. Then he ejaculates and uses his feathers to wipe the “seed” all over the eggs. Eggs are especially porous. Abracadabara! Eaglets.”

Eagle ruminations in our usual segue style naturally lead us to bird watching. Out of a couple seconds of silent reflection on birds and sex and eagle eggs Angela launches a question. “Fertilization? How do birds procreate, anyway?” “Hmm,” Shawn is thinking out loud. “Are birdwatchers not nature lovers at all but porn voyeurs? Are they really trying to sneak a peek?”

Josh perks up. “I’ll just Google ‘bird porn.’” That’s a good idea, I’m thinking as Angela herself perks up. “No no no. You better not Google anything related to porn.” We all laugh. “Duh.”

Tomorrow I will ask Mike for forgiveness.

I name my new 2011 journal “As I Lay Living.” Shouldn’t “lay” be “lie”? Or did Faulkner intend “lay” to be active? Should I really be questioning Faulkner’s language usage? Maybe I should read the book.

The weather is unseasonably warm. Phil, the chaplain, stops by with fresh coffee from Smokey Row. We sit on my private porch, both not believing that it could be 68° in January. We agree that God is revealed in the dry pre-spring landscape. Coffee with a new friend…

I spend the rest of the day getting ready for a book club baby shower. By “getting ready” I mean that I ask my aide to set up seven folding chairs around my room. I plan to stay in bed. I guess all eight of us will be here.

Jane is all aglow. We throw baby presents at her like confetti, like little scraps from a roomful of gushing and doting oneness. Jane’s daddy support is sometimes there, often times absent. We hate him for his absence but love Jane and Owen. We gush. We dote. Jane glows.

Welcoming life in solidarity. After all, hospice is a place to celebrate life.

Jean tells me later that we have a new companion–a woman. Her gender is all the information I can ask.

We are five.
Go here to read Day 3