This is It

A person who is terminally ill commonly passes through a series of stages marked by physical and emotional changes that are recognizable to health care professionals. One of the last stages may be referred to as “Actively Dying.” As its name implies, this stage can be physically and emotionally active and, for a caregiver, very difficult. Inviting in someone supportive who has been through this stage before can be helpful.

In contrast, the stage after Actively Dying is calm; eerily quiet, simple. For caregivers, it feels like a long exhale after hours or days of gasping for air. Our loved one is still alive, just resting now before embarking on what many believe is the final journey home.

“This is it,” the nurse tells us, in a tone so tender and kind, it belies the words she is saying. “He won’t wake up now, but he can hear you. You can still give him the comfort and love you have been providing all along.”

A shiver ran through the room, and she continued, “If you see two vertical lines on his forehead, a number eleven, you can give him pain medication sooner than scheduled. This is about comfort now. You did a good job. You are all doing such a good job.”

 

For a Moment

Jorox Canyonby Penny Moore

For a moment

When I sink into the knowing

I feel you breath with His breath

The wind lifting ribbons

We untie ourselves without knowing

I like to hold you passing through

The ribbons gently waving on

The palm of my hand joining

Our passing on One to another

A moment never changes

When you touch it that way

 

 

Eileen

After this visit, I drove away along tree lined autumn parkways, past the French Meadow Bakery and the CC club, through downtown, toward home. I put each of my babies into colorful nighties, under yellow orange green sheets in lively rooms. I wondered, one day, will they blow a kiss to say goodbye? Will they cry out for me, 90 years from now?

suitcase

Getting There Takes Some Time

Eileen sleeps the sleep of a traveller

Fitful, pulling at her own translucent limbs

transparent skin gathered up and quilted together by scabs and small bruises

at 93, this is life

imagine

at 23, this life

applying final touches to pursed ruby painted lips

she blows a kiss to mother and then away, down the steps, a man there waiting,

or a gaggle of girls There is a war on

Friends admire her raucous laugh, tease her for dancing clumsily, share secrets

she will take to the grave

Now, frail and pointed, a body uncovered and empty, she carries only these

Eileen reaches out Cries out for Mama, for Mother

She accepts a stranger’s hand, calms, lets go a tear which travels

over her desert cheek in a sideways trajectory

gradually finding its way along the cracks and fissures left there by time

Through plastic blinds, the moon blooms into fullness, a moon just made for traveling

Tonight Eileen will be traveling

 

Quote

I’m Going to Miss These…

My friend Marybeth woke me up today when a loud buzz announced a new message coming in from Australia; subject line said: I’m going to miss these…
In the flash of time between reading that subject and opening the message, so many thoughts went through my mind about what “these” could be. Marybeth is on a year-long adventure with people she likes a lot. What’s there to miss? Uncomfortable beds? Beautiful people? A certain tree, plant or flower? Bugs? Fascinating accents? Unforgettable cuisine?

And then my phone died.

So, instead of plugging it in, I rolled over and thought about what I might miss someday. I have been on a life-long adventure which, God willing, should continue for the foreseeable future. But what about this place, this week, this day will I miss when I look back on it? The man beside me, snoring in a quiet, kind of soothing way? The coffee pot clicking on by itself? The paper dropping from some invisible hand onto my doorstep?

I miss the babies who became my children, yet I love those young adults as much as I ever have. I miss the gardens outside the incredible house we just sold to a stranger in exchange for a handful of cash. I miss the Christmas holidays I thought we’d celebrate there. Soon, I will miss that handful of cash. But what is there about now that I will miss? What am I forgetting to wrap my arms around and enjoy? What is already in my life that I will see in the rearview mirror and long for? What do I have that I will one day wish I held onto?

Last week, I stood outside my mom’s apartment building, a place we call Fawlty Towers (because my family relabels names of places). I stood with three people I care about. One lit up a cigar, two shared a single cigarette, and I carried a heart-attack in a bag (aka Chinese food and a dozen chocolate chip cookies). I will miss summer evenings in front of Fawlty Towers. I will miss our singular family culture. I will miss these three people, when some of us are gone. Perhaps they will one day miss me. I suppose so.

The whole carpe diem thing kind of got the better of me about then. So I rolled out of bed and stumbled through the kitchen, to the garage. As I hopped on my bike, the icy morning air woke me up for real, and I steered my trusty old ten speed toward Lake Harriet. Most people, even people I live with, don’t know I do this. They would tell me not to; it’s dark, it’s cold. But these morning rides are the best. I’m going to miss these.

 

What are You Trying to Say?

Just before you dropped the call, slammed the door, threw that plate across the room, what single thought went through your brain? Was it a well-composed, carefully crafted sentence, meant to influence and impact someone you care about? Or was it a kind of primal scream, meant to liberate yourself from the mental and emotional anguish of having to deal with… with… that idiot over there? Did it help?

What if time froze in that particular frame? What if that were the last dropped call, the last slam, the last plate in a cupboard that once seemed teeming with plates and cups and bowls? What if the person you wanted to influence went away and the discussion ended, abruptly, permanently, forever? What then?

Relationships end all the time. Family relationships included. Everyone knows about some broken sibling relationship, some father/son breakdown, some daughter who can’t stand the sight of her mother, let alone walk the same sidewalk together. It happens like that all the time. What’s the big deal?

I heard today about a grandparent whose children were factioned. (Is that a word?) At Grandma’s wake, they stood on opposite sides of the casket and never spoke. At the funeral, neither side spoke nor even chose a reading; they let the church volunteers take care of it, rather than try to hold a civil conversation, which they knew was never going to happen. There was no lunch following the service. The burial was silent. They parted once and for all at the gravesite.

Could they have heard each other out? Could they have asked better questions? Could they have let bygones be bygones? Some people experience horrific injustices at the hands of family members. I get that. But more often, it’s some little thing, some disagreement about who was supposed to do something and didn’t, or was supposed to say something and didn’t realize it, or whatever. Usually, if you ask around, the not speaking part was the result of something so minor that sometimes it can’t be pinpointed at all.

So, we don’t eat tuna hotdish together after the funeral. So what? So, what would Grandma want? What are these adults teaching their children? What minor conflict escalated to the point where whole families stood cold shoulder to cold shoulder, buried a parent, and left without a word? Relatives. Blood. Kin. This is how we do loyalty? This is how we do commitment? This is family? Maybe it’s no big deal. But maybe, to the next generation, it might be.

Hospice Physical Care

Hospice Care involves physical, emotional and spiritual work. For some caregivers, providing physical care is a difficult project. Adult children who are successful in other areas of life find physical care to be especially challenging because it does require just a little bit of coordination and forethought, and it might take a few tries to really get it right. Also, it might require intimate contact with someone who lived life very modestly. I know, during my dad’s hospice, I had to leave the room when my sister shaved him every day. It wasn’t a big deal, it just wasn’t something I was used to. Oral care was okay for me, however, and my sister never got used to that. (Takes a village, right?) In hindsight, being able to provide physical care for our dad during his hospice deepened our relationships with this person who had always taken care of us. It was a way to thank him. It was also something we could DO, something we had some control over, in a scene where most everything seemed to resist being predictable and controlled.

Hygiene, Oral Care, Turning, draw sheets… what aspects of bedside care are the most important for hospice family caregivers to understand? How do you explain or teach it to them in the clearest, most effective way?

483 Days: Are we there yet?

How do you heal after the death of someone you care about? Someone who cared about you?

Let’s see. It’s been 483 days since that windy Wednesday afternoon when my family said goodbye to our dad. 483 days. Are we healed yet? Am I?

At the one week mark, we were hosting a wake, planning a funeral, burying our dad’s casket in the snow. That was healing.

At the one month mark, we gathered together to handwrite thank you notes to the many, many friends and others who reached out to us during our difficult time. We laughed, we cried, we remembered great times with wonderful people, felt grateful for the presence, for the encouragement, of so many others, and honored our dad’s life and long-reaching legacy. That was healing.

After a few months, we reorganized some holiday traditions because it wasn’t the same without Dad, and we knew it couldn’t and would not have to be the same. That was sad, but healing, too.

By the time the one year mark came around, the anniversary, we all agreed it had become a value to reach out to others who had lost someone. “I didn’t know it mattered,” someone said, “until I knew how much it mattered to me.” “Should I take time off work and fly across the country for her mother’s funeral?” my daughter asked. “Absolutely,” I told her. And she did. And that was healing.

Now, here we are, 1 year 3 months and 27 days later. Are we healed? We are changed. Death is not a transaction; grieving doesn’t have a start and a finish. We likely began grieving long before Dad died. We grieved over his lost car keys, his diminished ability to play piano, his fading interest in politics and football. We grieved around his lost mobility and his waning appetite. We grieved for his unique ability to communicate, to tell a story, to recount an event that had happened years before. We started grieving long before that bitter evening in December, 2012.

And we will grieve on. But like us as people, our grief is changed. We look at a photo and smile. We remember a story and call a sibling to share the memory, to laugh and enjoy and appreciate and celebrate the memory we are so fortunate to have. Strength is unleashed as we move through our grief.

483 days. Healed? Never. Better? Much.