I wanted to crawl into bed with him
But I couldn’t figure out the guard rail.
Just one last time I wanted to lie with him
Tell him how he was loved
Tell him to be brave.
But there was that damned guard rail
And my fear
That kept my mouth from asking …
Asking how the hell to move it …
I just wanted … he just needed …
We needed each other, maybe.
I wanted to help him sit up,
Swallow down the fluids bubbling
Up from his swelling lungs.
I could have done that
But for the guard rail.
What the hell did he need guarding from?
He was within moments of moving
A cat wandered across the patio just outside
Then he died.
And the guard rail stayed,
And I stayed,
And he left.
And there’s still a fence between
Toward the end of 2017, I decided to think of a word that might help me focus my intention for 2018. My Dan was increasingly unwell, and as I thought through a list of words that seemed likely, I settled on the word, “Grace.” It suited me because I wanted to practice grace every day as Dan and I worked toward the goal of restoring his health during 2018. I looked forward to performing millions of little grace-filled acts … preparing healthy and healing meals, discovering new ways to increase Dan’s energy, and finding every possible way to keep ahead of every health snag that might crop up. Still, we simply didn’t know how truly ill Dan was. When he died then on January 2nd, only two days into what was to be our year of grace, I realized that I had unknowingly selected the right word, but in a totally different context. Grace! On that day … January 2nd … as Dan’s body failed, piece-by-piece, organ-by-organ, system-by-system, I needed a tremendous amount of grace, if only to keep my legs standing. Then, in those first days and weeks, I needed to live deep inside my chosen word … to let it wind around my broken heart, to enter my bones with the strength of its promise. Grace! People say that grief comes in waves. It’s true. Big, towering, breath-stealing waves. It’s clear I live now in an ocean of waves that sometimes knock me to my knees. But it’s grace that helps a widow stand up again … and again. It was grace that gave me the courage to say yes to the many kindnesses that people gave so freely, and it was grace during those early days that helped me get through the myriad administrative duties of paperwork and shaky signatures and tearful phone notifications. Grace was indeed the right word.
Near the end of February, a dear girlfriend pointed out that living within the influence of only one word is like eating the same thing for every single meal. I took her advice to add a new word each month. Again, I thought long and hard about my next word, finally choosing the word, “Comfort” with visions of a massage and pedicure because it’s been a very long time since I’ve had such treats. Comfort! Two days after I wrote down my new word, I came down with that horrid chest cough that’s been running around the country and striking down everyone in its path. Again, comfort was the right word, yet again within the wrong context. So, now I’m hunting down small moments of comfort within cups of chamomile lavender tea and big spoonfuls of cough medicine. I’m living for the comfort of locating a few minutes of sleep between rib-shattering spasms of intractable coughing. I’ve discovered how so many small nuggets of comfort still live in an inelegant world of improbable words.
When April comes around, I don’t know if I should offer up another word for the Universe to tumble around into something unintended, or if I should stick up my chin and begin choosing a word a week. The biggest question is what my next brave word should be!
How do I thank you all for your kindness, your generosity, your presence as I continue to grieve the loss of My Dan?
Some days I need silence, closed shutters, the darkness of dealing with the death of my beloved.
Other days, I want to fling open all the windows and welcome the light.
There’s no rhyme nor reason to either response.
Today, I set the little kitchen table for Spring.
Tomorrow I may detest its sweet offer.
This is what grief looks like.
It’s messy, and fearful, and beautiful in its own way.
It’s bunny plates on a little table.
My dear and wondrous friends … tomorrow will be one week since My Dan died. I miss him so much I can barely breathe. Today I received 15 awful, dreaded copies of Dan’s death certificate. It was all I could do to keep from falling to my knees. But I made it home where I could speak with a couple of friends who made me laugh and remember and find my legs again. Here’s what I learned today:
1. No one should EVER be a widow or widower.
2. If that happens to you, you must be strong. Strong like Wonder Woman or Super Man.
3. If you feel desperate, it’s okay.
4. Tears will happen.
5. Tears will happen again.
My Dan has been placed on hospice. A lovely nurse named Star evaluated My Dan and deemed him qualified for service. Things for him will now be wonderfully and blessedly simplified … no more running to three different doctor appointments a week. No more having people come to the house forcing him to exercise with bands and weights in spite of a lung filling with fluid and a body failing with exhaustion and multiple organ disease. Comorbidities, it’s called … when many systems and diseases are involved. Each one builds upon the other, causing a final crash of failure.
It’s good to make the process as gentle as possible. Hospice does that when the time is right.
For us now, there will be one doctor, one nurse, a simplified medication regimen, a calm and quiet atmosphere, and love, love, love. Dan is sleeping nearly 22 out of 24 hours a day now. He’s now on oxygen, which helps his breathing. With a right lung infiltrate and plural effusion, breathing was becoming increasingly difficult by the hour. The hum of the oxygenator provides not only relief, but a comfortable white noise in which to relax. There are some relaxing meds also now on board … liquid medication to help Dan ease into a new sense of serenity.
Even with calming medication, every time Dan wakes, he says he’s disappointed that he woke up. He’s tired. I’m doing my very best to give him a soft and generous landing place whenever he’s awake. His organs are not actively dying at the moment, but he’s simply and completely tired. Things can go this way for quite a while … he’s still eating and drinking fluids as he wants. Although his thoughts are confused and disorganized, he’s still talking. His disappointment may need to stick around for a while. In the meantime, he has Wilson the Labradoodle and Serena the Siamese to keep watch and provide an extra dose of comfort. There is something to be said for the power of fur.
It’s a process … a long process … that we’re navigating as carefully and thoughtfully as we can. It’s been 12 years for us now. No wonder we’re getting tired!
Thank you all for your love. ~ Auburn
Lub dub, lub dub, lub uh-oh.
Four years ago, My Dan suffered a massive heart attack during a simple angiogram procedure. He received three stents in the right artery, and then another stent following a second MI that evening. He had a third MI the next morning and was diagnosed with right-sided, diastolic heart failure, kidney failure, and now liver failure caused by his heart. He’s survived prostate cancer and lung cancer. He dabbles in some type 2 diabetes, and cognitive impairment. I think that’s plenty enough for one guy to endure.
Following a 2-week hospital stay and a 2-week skilled nursing / rehab facility stay, My Dan is now home. He turned 75 while in the nursing facility.
We want to tell you what it’s like for a guy like Dan to have multiple comorbidities (diseases), and for a wife to participate as his caregiver. We are strong, but we’re struggling. We love that you might follow our journey. If there’s something you might gain from us, we’re honored to share. In the meantime, please know you are loved and we thank you for reading.
We’ve started a Caring Bridge blog and will duplicate the blog here, so you can go where you find it most comfortable to read.
Know, however, that at this page, you’ll also get the latest info on what’s happening with my work on my recent book … a MYSTERY this time. It’s appropriate for me because these days, life is indeed a mystery.
Amidst all the news of the daily tripe of who’s taking away your healthcare, and who’s committing fraud, and whose words are treasonous … amidst footsteps I cannot follow and other breadcrumbs I’m inspired to pick up. Amidst news that one dear friend just lost her husband early this morning and another dear friend is losing her beloved dog within the week. Both are terrible losses, and I make no judgment over which woman might suffer more.
They’ll both suffer.
And then, amidst new earrings that make my ears itch, and finding the first mid-spring scorpion in the house (who needed to be swiftly put out of its misery), and a houseful of beloved family and guests, and their pets … I’m nevertheless watchful over my dear, sweet Dan.
He’s been extra tired lately. I’m watching him.
He’s still going to the golf course, because that’s what he does. He’s a golfer. No, let me rephrase. He. IS. A. Golfer. That’s who Dan is. He’s recently said that if he can’t play golf, he won’t know what to do. My ears itch … did I mention that?
Then again, I’m gloriously happy. My Dan IS. Still. A. Golfer. I have family here for another week and all that means. A granddaughter is having a wedding. We’re all happy and smiling.
And I’ll do my best to not follow breadcrumbs. For a week.
I asked a question tonight about God who I’m not at all sure about these days. I’m still here. My Dan is still here. But we’re experiencing some struggles and wondering about it all. So, I screwed up a question about God and whether it was worth thinking of that notion. A lovely friend answered that she’d been to a poetry event and found God in the art. I answered: “Thank you. God is indeed in the people’s poetry. Indeed in the art. In our words. The strokes we make on paper. We wouldn’t write down our words if the Universe didn’t listen. Thank you for the reminder of that. Thank you for reminding me of our skin and what we all think of the nonsense of what that all means in the eyes of who might have created all our lovely tones and hues. Thank you especially for reminding me that there are different and fierce and determined ways to find our ways.”
I still don’t know if there’s some sort of God who looks over us, or if we’re just a terrible parasite eating up this beautiful earth.
The good thing is … we’re still here today and poetry still enthralls, and now I’m looking for materials to make a pussy hat so I can march around the inside of our house on behalf of My Dan and all his things.
So what exactly did we learn this last year?
Did we find the exact moment when the underground crocus bulbs came alive?
Or did we learn how to efficiently organize our husband’s medicine for the week?
Did we offer ourselves up like a shining martyr?
Or did we fall as any human might?
2015 was a long year, filled with perfect dreams.
And grave disappointments.
Followed once more by sweet triumphs.
I worked hard to keep my hubby alive.
I gave up my art, my writing, my lifeline.
What else would someone do for someone so loved as My Dan?
And he lives. He thrives. He has a pacemaker now.
He sings and thrums through the house.
He’s like a bumblebee, lazing along with a deep base voice.
But where is my pacemaker?
My maker of pace?
Where are my words, my crayons, my pages of writing?
That’s what 2016 is for … to find again those vital things of art.
To discover again the person I once was.
Dan is well.
I will be too.
My duties as caregiver escalate now along a different path.
We’ll talk about that other path another time. Just know
We will survive.